Cancer Survivors Network

I also have hurthle cell cancer and had a total thyroidectomy on 7/30. I feel good as far as the surgery went- no problems there. Now I will go for the radioactive iodine in six weeks. Has anyone done that? What were the results with the hurthle cell cancer- I mean, how well did the thyroid cells respond to treatment? I actually had my thyroid completely removed (due to hurthle cell adenomas) before I found out it was actually cancer. YESTERDAY is when I got the results. I am still in shock and my mind is running a mile a minute.

I am just a little bit ahead of you in terms of treatment. And I'm still in the "can't quite believe this is happening" stage. I have always been very healthy - hardly ever even get a cold; never had any surgeries, etc. So, this is quite a shock. On top of that, my business partner and very good friend was diagnosed just a year ago with terminal lung cancer.

I had my thyroid removed in two surgeries, July 2 and July 16. After going off the thyroid replacement and going on a low iodine diet, I will have my radioactive iodine treatment Sept 8. I hope to know a lot more after Monday when I see my endocrinologist. A good friend is going with me and we are preparing a long list of questions.

I wish I had more to tell you. Right now I'm feeling pretty good. My energy level is high, but I'm having a lot of trouble sleeping.
I am on cytomel twice a day. I am worried that the radio-iodine doesn't always work with Hurthle Cell; and worried about the side effects of the treatment.

Thanks for filling me in on your situation. I am sorry to hear about it, but I must say it makes me feel a little better knowing that I am not alone out there. I hope that's not coming across as rude, I don't mean to be... I just need someone to talk to who is in my boat. I am guessing you are a female? I am a 38 year old mother of three.... I didn't even know that I had any nodules- my primary care doctor suspected problems with my thyroid... then onto sonograms, FNA's, total thyroidectomy, cancer.... it is just unreal. I just began synthroid yesterday. What is cytomel? Is it a form of thyroid hormone or is it the med. that keeps you from getting such severe symptoms prior to the radioactive iodine treatment? The info. out there on our type of cancer and the iodine treatment makes me nervous- I just want to be told for sure that after the iodine, the cancer will be gone but obviously that won't happen- the waiting and wondering are frightening. You are like a week or two ahead of me- my iodine treatment is Sept 18th. I just saw the endo. yesterday, but I didn't have even a single question because I was so stunned. Please let me know what you find out when you and your friend go, and I will keep you posted on anything I hear. Where are you? I live in MD. Also, I am sorry about the run-on paragraphs.... my enter key doesn't work and trust me, that is a pain in the butt! :) Good luck and thank you for listening :)

Thank you for the information on this board. My question is now that it's 2 years later for you, what would you do differently? I'm just starting out, in 2 weeks I've had my sonogram, FNA & core biopsy which shows Hurthle cells and will meet with a general surgeon with a thyroid specialty in 2 days to discuss surgery in another 2 weeks. I setup the surgeon appointments before I found out the biopsy & Hurthle cells results.

Hello all

I have just joined the group but am so happy to report that I am cancer free at the time! I am 28 years old and was diagnosed when I was about 20 weeks pregnant with my daughter (who is healthy as she can be)! I underwent a partial thyroidectomy at 18 weeks, found out it was Hurthle Cell, was able to carry Sophia to term and went in for the total thyroidectomy about a month after delivering Sophia. I was treated in August 2007 with Radioactive Iodine, which showed an uptake in the thyroid bed and I was put into isolation and given the full dose of RAI. I can say that the worst part of my treatment was the low-iodine diet. Isolation for 24 hours was difficult, but I made it through just fine and with a better appreciation for what I have in life. Six months later, I was treated with a tracer dose of RAI, followed by full body scans and luckily, those scans came back clean. This past April, my endo approved for me to take the Thyrogen injections as opposed to going hypo while prepping for treatment. I still had to follow the low-iodine diet, but atleast my body was not hypo and worn down from not have my meds. The results from those scans also came back clean! I am now on a two year break from treatment!!!

I am so thrilled to report that I am now pregnant with my second child, a little boy, who will be with us in January 2010. Cancer is by far the scariest battle I've fought. It's filled with ups and downs and just not knowing what havoc may be going on inside your body. I know, it's hard. BUT life goes on and you learn to deal with it the best you can. I still have days when I think it could come back...and it could. But I refuse to live my life wondering "what if". The best advice I have is to get a good endo...one that knows his stuff and one that is compassionate to your specific situation. I can say with 100% certainty that I have the best endo in the world...I would argue with anyone. He saved my life and has given me back the reassurance and confidence in my body that I lost. My life will never be the same but I'm grateful for that.

If anyone has any questions about my story, just let me know. I was so lost when I was diagnosed, this is such a great support site.

Hi,
Congratulations on your healthy little girl and the anticipated birth of your baby boy soon.
I had a thyroidectomy July 09 and the I-131 in Sept.09. I have not seen my endo since late Aug. My surgeon did a modified throat dissection and has scheduled me for a thyroid bed ultrasound in early Feb. My TSH levels are 1. and I have no idea if this is where they should be. I am on Synthroid 1.25mcg's once daily. I am a 59 year old mom of two beautiful adult daughters and have a wonderful and supportive husband who has been along on this ride with me. I still have tenderness and some pain in my throat and neck, weight gain, lack of energy, hair loss, high blood pressure,swelling in my feet and ankles, etc. My endo does not want to treat the possible hypertension until he is sure I need meds since there was no history before surgery. I'm sorry to have so many questions, but I am really desperate for information on this disease. I'm not sure what is normal and did not anticipate so many questions at time of surgery. Anything you wish to share would be greatly appreciated. Thank you for sharing your story and again, congratulations on your babies.

I forgot to tell you about cytomel. It's a thyroid replacement hormone, but just T3, I think. My understanding is that it's easier to come off cytomel prior to the radio-iodine treatment.

The nodule of the right lobe was 4.5 cm - pretty large. The surgeon said he found no cancer in the left lobe (second surgery) and it hadn't spread to the blood vessels. I, too, was in shock when I got the diagnosis from the surgeon at the post-op from the first surgery. No risk factors, no family history. And the fine needle aspiration and first surgery showed nothing.

Off to the endocrinologist tomorrow to see what he has to say. Getting my questions prepared. This site and ThyCa.org are good sources of what to ask.

Take care.

Pat

Hi Pat,
I'm curious about something...did you get benign results at your first surgery? I'm just wondering because I got benign at my surgery yesterday, partial on my left lobe. He said the final results will be in today or tomorrow. Could it still come back as malignant?
I'm confused...

My friend and I drove up this morning and it went very well. The doctor is very smart and was patient while I went through all my papers with all my questions. He clarified the radio-iodine procedure and i feel much better about what's going on.

Because I am over 45 and nodule was 4.5 cm and seems to be contained to the thyroid at this time, I am Stage 2.

The results of my blood work showed by T3 level was still too high, so the doc has reduced by dosage again to 12.5 mcg twice day.

I will go off the cytomel Aug 19; start the low iodine diet Aug 28; have blood work Sep 2.

On Sep 8, I will have a dose of I-123; the next morning I have the uptake scan and another dose of I-123; the next day I have a whole body scan. Then the 11th, I have the dose of I-131. Over that weekend I will need to be somewhat isolated. The 14th I start the Synthroid and resume a normal diet. The 18th, I have another whole body scan.

I'm hoping I can get through the hypothyroid period without too much of a reaction; I really don't have time to be that tired. But we'll just have to se how it goes.

I've been pleased with my care so far.

I am glad you had all of your questions answered and are in capable hands. Stage 2 is good- caught early! :P) I am guessing you work full-time? Nursing school is very demanding, with clinicals that can be anywhere up to 2 hours away, so I am going to run into some trouble, too with the whole fatigue thing. Not to metnion weight gain- I am already overweight as it is. I have contacted the professors about being radioactive and haven't heard back yet- I hope we can work something out so I can graduate with the class I started with. So does the endo. sound pretty confident about the radioactive iodine treatment?

The endo didn't sound one way or the other about the treatment. It seems that we won't really know until the scans to see where I light up.

Yes, I work full time and then some. I am a real estate Broker and co-owner of my company. My business partner was diagnosed with Stage 4 incurable lung cancer last summer. So, I have been managing the company while he has been in treatment and traveling when he can. So this has hit us really hard. But we got great news yesterday after his recent scan. They didn't find any cancer in the mass in his lung, so he seems to be in a kind of remission. He had been having chemo every 3 weeks, but now won't have another for 8 weeks.
It's nice to have some good news for a change.

Try not to worry too much about your nursing classes/clinicals. It's hard work and I hope you're professors will work with you. Take care.

I am sorry to hear about your business partner... life doesn't ever ask us what we want. Lung cancer is a devastating blow... A friend of mine has breast cancer and just underwent a mastectomy AND a hysterectomy at the same time. She is doing GREAT and has taken on a positive attitude. At first she was negative and angry- she pushed past the anger and has now taken on a "how can I help my healing" attitude. How are your partner's spirits?
I think it's the best thing that we keep busy and keep pushing through the side-effects rather than let the side-effects beat us. It won't be easy, of course, but it's better to keep life as normal as possible. I was assuming that the scan will be the real answer as to what we really have going on inside. That, too, is a little scary. I will pray that neither of us have very much "lighting up".]- wouldn't it be great to hear that there is NO LIGHT and you don't need any more treatment!!!! :) Wishful thinking.......

Hi guys,

My name is Chris. I'm a 49yo male. I was diagnosed with hurthle cell in mid June. My story is about the same as yours.....lump in thyroid felt by my ENT, CAT scan verified, FNA came back as Hurthle cell, told it was a VERY small chance it was cancer, had a nuke scan that came up cold, partial thyroidectomy of the affected lobe, came back from path for Hurthle cell carcinoma with some papalary in it. Also got MRSA (an added bonus!)One week later back in for the other lobe removed & some lynph nodes at the same time. Had a small spot of begnin hurthle cell in the other lobe but that was it. I did have a small spot of Papilary carcinoma in one lymph node which my endo said was VERY unusual but he wasn't that concerned about it. Went off meds, went hypothyroid, went on low iodine diet, and had I131 treatment on the 26th of Aug. Still in partial seclusion, but at least I'm back on my meds which is a relief!! I would love to keep in touch with you guys as we are a very small group. Seems like everyone has alot of Q's......as do I.

Dear Chris,
Have you had a post treatment whole body scan? Is that part of your protocol? Does anyone communicate with you as the treatment happens? or do you have to wait to see your endo?
Just the not knowing the procedure us unnerving.
And going hypo doesn't seem to cure the insomnia. I'm having lots of trouble sleeping at night.
Thanks for posting.
Pat

Hi Pat,
Scheduled for my body scan on Fri the 4th. As I've seen mentioned here already, Hurthle cell has a tendency not to uptake radioiodine so just because you have a clean scan doesn't mean your clean although it is protocol to do the I131 because it sometimes does work. After studying up on scans it looks like a PET scan is the one that will tell for sure if your cancer free. Going to ask my endo about that at my next appt. to see if he's going to schedule one for me. Seems by reading everyones posts every endo does things a little different. I didn't have any kind of scan prior to my 131 treatment.

As far as the I131 treatment, it was no big deal at all. No side effects....no anything. Did freak me out a bit just to know that radiation was coursing through my body. But other than that I couldn't even tell I was going through a treatment.

Insomnia? Pat......we've just had a recent diagnosis of the big C! I've had insomnia since the day of my diagnosis! The stress and fear is just unreal. I think that's pretty normal. For me it's getting better though and ambien helps somewhat with the sleeplessness. I just take one day at a time and hope for the best.

Thank You for posting. As I said.....we are a very small group. Lets keep in touch.
Chris

I also deal with this type of cancer. My doctor said she won't do a Pet Scan unless my blood levels change, but how do I know if the thyroglobulin is accurate?

She said the Pet Scan won't pick up a tumor unless it a certain size???

I am going to look that one up, but maybe you know something....

Hi Lola,

No.....I don't know anything other than what I've read on the net and what my endo has told me. The article I read about the PET scan (I can't even find it now) just said that the PET scan was more reliable than the MET scan if the Hurthle cell isn't soaking up the 131. It was also one of those articles that was written by a doctor for doctors so it was a little difficult to understand. I think I mispoke when I said "the only way to know for sure". It's just more reliable.

As far as the thyroglobulin, as far as I can tell the only thing that can produce it is thyroid cells. If we've had a total t-ectomy we should have none in our blood. As far as the accuracy of the test I don't know about that one.

How far into your diagnosis are you? How are things going? Would love to hear your story.
Chris

but please clue me in. My story: Back in Jan. 2007 I had been having shortness/painful breathing, trouble swallowing and a couple of incidents of near fainting. The Drs. ran tests and everything looked "normal". (they had also done a CT scan of neck/chest with showed nodules, but no one bothered to tell me) So fast forward to Jan 2008, I am feeling lousy still feeling like I have a marble in my throat and another CT is done. They decided to let me in on the nodules. Went for needle guided ultrasound biospy, and it comes back with hurthle cells. I was told it's 50/50 chance of cancer, and whenever they see this, the thyoid is removed. On Feb 14, 2008 I had a total thryoidectomy. I had several nodules in each lobe. Got the diagnosis a week later. I went for 1st scan in April 2008 to kill off residual tissue. I still get get really confused about the levels (tsh) but so far mine have been good, despite the symptoms i continue to have. I had my second scan in May of 2009 and have ultrasounds every 3 mos. and bloodwork, when I see the endo. I have asked for a pet scan but the Dr. said if the bloodwork looks good then we wait. Whats your story and how are you feeling since you were diagnosed?

Hi Lola,

The MET scan is the one that picks up any radioactive iodine that is absorbed by thyroid cells and shows up as bright spots on the scan. Again, Hurthle Cells have a tendency not to absorb iodine. A PET scan.....the way I understand it, uses sugar to detect cancer. Cancer cells metabolize sugar faster than other cells and I guess they have some kind of detection device to find those spots. At least thats the way I understood it. If your endo said the tumors have to be a certain size for the PET scan to detect....that's probably right.

As for my story, it's pretty basic. I posted it up a few spaces if you want to read it.

How am I feeling? Thats the weird question. When I went to see my ENT, I felt great. I had quit smoking for 6 mo. (35 year smoker) Was working out....eating healthy.....had lost some weight even though I wasn't really overweight. When I had my first partial t-ectomy I got MRSA....that severe, drug resistant bacterial infection. They put me on a myriad of antibiotics that I think may have damaged my kidneys. I have kidney pain now and my urine looks kind of orange like it may have blood in it. My throat is hurting on and off and the pain seems to radiate up my jaw to my ears. I have pain to the touch under my ears ( i think there's lymph nodes in that area). Also, my blood pressure is skyrocketing after I went back on my thyroiod meds after my I131 treatment (150/107). Overall I feel terrible and feel like my cancer is spreading or has spread and is killing me. I realize all of this could be stress related as I'm pretty freaked out but who can tell? Maybe I need a shrink.

Sometimes a shrink can be helpful...

I have that same feeling as far as the cancer spreading. I do have anti-anxiety meds to take as needed and an antidepressant as well. Sometimes if things are really overwhelming it helps to have a something to take. It's called adtavan (sp?)

Did they take any lymph nodes during your surgery? They did not with me, though I wish they would have. Even before I knew the symptoms of Hurhtle cancer, I was having some major issues. Have you had trouble wiht your teeth? (pain, aching, cavities)

Does your throat hurt when you inhale and exhale? I think you should ask your doctor about the anxiety. Did you have high blood pressure before the thyroid meds? What does your doctor say?

Do you feel like everything in your life changed, when your thyroid went on the rampage??

Sorry it took so long to get back to you. Very busy. Back to work...seeing the grandkids...scans....doctors....the whole bit.

Yeah.....my doctor gave me Xanax for my anxiety, which does seem to help a bit. Seems like the thing that helps more than anything is time and acceptance of your situation.

Yes, my doctor did take some lymph nodes out on my 2nd surgery right around my thyroid. One of them had a small spot of papillary cancer in them....so I actually have 2 types of thyroid cancer. My main tumor was primarily Hurthle cell. Had my scan last Friday and saw the doctor on Tuesday and he said there was a lit up spot under my right ear. He said it was probably another spot of papillary cancer in a lymph node but it absorbed the I131 well so it was probably dying. No other spots anywhere. Looks like they are doing the same thing with me as they did with you. Thyroglobulin levels in a month.....if they are normal....we wait. If they are high.....we go looking for Hurthle Cell.

Yes.......pain in my throat. Sometimes when breathing. My jaw and sometimes the roof of my mouth hurt. Can't say my teeth but it's a very nondiscript pain that moves around and radiates. I also have some pain that seems to start at my thyroid area and radiate downward and into my chest. I see my ENT surgeon next week so I'll ask him about all those things when I see him.

Yes......my life has changed forever. No matter what the outcome of all of this is. But not all negetivley. I will never take one more day of life for granted again. I will never hold grudges, anger, and resentment toward anyone and live with unhappiness ever again. Maybe it's a kind of gift in a way.

Keep in touch,
Chris

I can so relate to your last paragraph about your life changing forever. I could not have said it better myself.

Recently, I received an email from someone that I met only one time, but it has had an amazingly positive impact on me at the right time in my life. It is a download of the Andrea Boceli & Celine Dion - The Prayer. You would probably love it as well. It gives me comfort and peace. If you can't find it on the web, just let me know & I can forward to you the email w/ the download.

Many Blessings to You,
Rita

Thanks for the song tip. I downloaded it and It's a beautiful song.

Many Blessings back to you and may God bless you.

Chris

I know this reply is really really late, but you are the first person I have seenthat said something about my teeth. After my treatment I had to have three wisdom teeth pulled, two of my back teeth chipped, and two cavities. My Dr and dentist said it's not possible that it had anything to do with the procedures or the cancer. After my second surgery my calcium levels were low and I had to chew Tums for like a month. I was told if my lip beins to chip to go strait to the emergency room and tell them i need a calcium injection because I could die. Everyone thinks I am crazy when I tell them it had to do with either the cancer or the procedures. If you get this I would love to know where you are in your treatment and how you are doing.

God Bless,

Ashley

I know where you are coming from. After my second surgery to remove the rest of my thyroid, my calcium crashed. I ended up going to the hosp in an ambulance. It has been over three months and I am still on 6,000 mg a day. That is 10 pills! They still don't have my synthroid right, I go from hyperactive to ridiculously sluggish. I worry what the calcium is doing to my kidneys. Okay, I've ranted enough, but thanks for listening.

It's sounds like you were lucky to have no side effects from the 131. Looks like I'm about 2 weeks behind you in this treatment.

As far as the insomnia goes, I am a light sleeper, but I am much more tired going hypo and it's just strange that I'm exhausted and can't fall asleep!. My endo is writing me a scrip for Ambien which I'll pick up tomorrow when I go for my blood work. At least I'll have it on hand if I need it.

How's the treatment going? Three days now? How are you feeling? Hope things are going well and you have no side effects. Shoot me a message if you have any Q's.

Chris

Hi, Chris

The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of !-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

Thanks for checking in.

Pat

Hi, Chris

The week went very well; dose of!-123 Tue; uptake scan and another dose Wed; thyroid scan and whole body scan thurs; only uptake was in the thyroid area; today's treatment was 130mCu of I-131. No side effects so far; just very tired. After the 2-hour drive home I took a long nap; more tired than hungry. Things seem to be going well. Follow-up WBS next Friday.

Thanks for checking in.

Pat

I was thinking about you this morning so I decided to drop you a line to see how your doing. Hope things are well. Any side effects from the 131? I had a few delayed side effects after the last time we talked. Lost my taste.....everything tasted like it needed salt. It's coming back now. I work a pretty physical job and when I first got back to work I think the sweat on my head was radioactive and irritated my scalp. Also some weird new throat and jaw pain.

How about you? how are you feeling? How did your scan come out?

Hope things are well.
Chris

I had started a new thread, but I'll repeat it here:

I have completed my RAI treatment and the scan looks good; no sign of cancer any where else. I am now taking Levoxyl (112 mcg) and will have my first blood work at the end of October. My pre-treatment thyroglobulin level was low, so the endo is optimistic. I had some neck pain/tenderness, sore throat after the RAI, but mostly the fatigue has been the hardest thing.

I also have been having some delayed side effects: some sores in my mouth and everything I drink tastes salty; and the taste of food comes and goes. I'm pretty spent by the end of the day; would be nice to be able to work just half-a-day for a while, but that's been tough. I am planning a vacation the end of the month to visit friends and family.

Thanks for checking in. In a strange quirk, I've just heard about another woman I know here who's been diagnosed and will have RAI next week; we even have the same endo and surgeon. Our sons were friends in high school. Just too weird.

I have just signed up and am presently reading thru all the messages that have been posted. I have had 3 surgeries and am presently waiting to have the radioactive iodine , which will not be done until February followed by the body scan. As very little has been explained to me I am wondering about your comment about "lighttening up". Does this mean that if there is still cancer it will light up when the body scan is done?

I just read the other posts and I can honestly tell you we all feel like that when we find out. Cancer. Jeez. I was, as I said, terrified. I do have some trouble with my left parotid gland swelling up once in awhile...if I smell something really good, and like Pavlov's dog, start to salivate. It makes me look like a frog!lol But the nuclear med doc says it's damage from the I-131. As for insomnia, boy, I can sure tell you that for years I would panic if I felt strange, or thought I felt a lump and would constantly touch my neck. It's normal. I am an RN and sometimes I think a little knowledge is too scary. :) Lee

Thank you for posting. I think it gives us all hope that things will be OK for us.

Thanks again for posting.
Chris

Hi healthsurvivor! I just had a total thyroid removal 6 days ago and just 2 days ago found out it was Hurthle Cell Carcinoma. Totally in shock right now and going internet crazy. After reading your post I feel hope :) Thank you for that!

After a nodule was discovered on my right thyroid in Jan 09, and a series of in determinant tests(sonogram, needle biopsy, thyroid uptake scan(cold nodule), I had the right thyroid removed in early May 09(my left thyroid was removed in Nov 90 and the nodule was found to be benign). The pathology report with a second opinion for Stanford Medical Center was Hurthle Cell Carcinoma with vascular invasion.

I found a noted head and neck surgeon at the UCSF Medical Center in San Francisco who was an expert in Hurthle Cell Carcinoma and after a sonogram showed additional thyroid tissue remaining, she performed a second completion thyroidectomy in Aug 09and took out 6 lymph nodes. The pathology report was positive in that it showed good surgical margins and only one of the lymph nodes showed questionable cells. After 5 weeks of a low iodine diet, I had 2 Thyrogen shots and the radioactive iodine ablation treatment the first week of Oct 09. The body scan a week later showed that the iodine had been taken up in two places--what appeared to be residual thyroid tissue in the neck and whis is most likely a lymph node with metastasized cancer below my left breastbone. The nuclear medicine physician indicated that it was positive that the iodine had been taken up as this is only a 20% probability; he also recommended that we do another full body scan in 6 months to determine if the radiation ablation treatment has killed the tissue which showed up on the first body scan. My endocrinologist who works with the head and neck surgeon confirmed what the nuclear medicine physician had said and also said that the blood test to determine levels of thyroid harmone were confirming that at least the second operation had removed the residual thyroid tissue so that blood test can be used to detect thyroid activity in the body which would indicate metastasized cancer. I see the head and neck surgeon on Nov 2 and will rely greatly on her advice as to what the next steps should be to maximize the chances that the cancer has been found and is likely to have been eliminated by the ablation treatment

WOW! It's interesting to see how "Hurthle Cell" really sends you into major investigative mode! Here's a view from a patient in the Canadian health care system. In 2004 a 2.4 cm. nodule was discovered on the left thyroid lobe. I was referred to an ENT at that time who's advice was "it's a very complicated surgery (thyroid) so we'll just keep an eye on it to make sure it doesn't grow". Well in the process of re-locating, changing family doctors, etc. the "nodule" was forgotten. Here I am 5 years later with a 4.7 cm. "cold" nodule. It was FNA'd in October and determined to be "Hurthle cell neoplasm (favoured) with hyperplastic nodule with oncocytic metaplasia". It may help most of you to know that the speed with which you are obtaining your surgeries and treatments is much better than what we in Canada have available. The earliest I can expect to have this tumour removed is "sometime" in January, 2010. We all know that the longer this thing remains where it is, the more potential it has to cause irreversible damage. Oh, and the right lobe also has a "9x5 mm hypoechoic solid nodule in the isthmus." So a total thyroidectomy will be performed sometime in January and two lymph nodes will be tested for metasteses.

Here is a wonderful publication that I've discovered during my research:
"Management of Thyroid Cancer and Related Nodular Disease" - I. Ross McDougall, 397 pgs. 2006- If you "google" the title, it will bring you to the google books site and the text is available online - He is a renowned "Stanford" thyroid specialist. Pages 258-260 deal specifically with "Hurthle Cell Carcinoma."

I'm afraid that at this stage I'm not terribly optimistic, even though I refuse to go down without a major fight. I'm the 55 year single mother of a 15 year old son and neither one of us are ready to see me leave yet! It encourages me to see some of the good stories that are being posted here. Thank you all and good luck!

Thanks for the tip on the book.
I found it on Amazon.

I would think before scheduling you for surgery there would be significant diagnostic information to indicate a reasonable possibility of cancer--for me it was 0) prior history of benign nodule in other thyroid lobe 1) a significant nodule, 2) indeterminate needle biopsy 3) cold nodule on radioactive iodine uptake scan. Based on these results the odds of cancer were high enough to warrant a completion thyroid-ectomy since the worse results if it wasn't cancer was the need to take thyroid replacement hormone for the rest of my life. The pathology from the nodule that was removed was hurthle cell carcinoma and that led to the treatment that I described in the post.

Your story sounds incredibly similar.
I had no history of past radiation to my neck. My family history only positive for slight hypothyroidism.
The DNA you are referring to is called Aneuploidy.
My tumor grew from 4.6 to 5.5 in less than 6 weeks while waiting on surgery which was in Feb.
Recently my follow ups have been positive. I do admit to thinking initially that once the surgery was complete,I was "good to go."
My last visit in November produced some surprising results. The bloodwork was so good (thyro down from 10 after RAI 131 to 0.03) that he is not repeating the whole body scan. I will undergo Thyrogen injections and another full neck ultrasound.
I found interesting reading on Hurthle Cell by J. Walter Kurts, M.D. While 5 years old, it was a very well laid out article.
Hope you will find this on the internet. It came from Baylor College of Medicine.

Please do not postpone your surgery. This disease, while rare, is aggressive.
I am stage III due to age(55) and tumor size 5.5cm., as stated above.
Mine grew just waiting for the surgery.
I am one year into this journey.
I wish I had found this website a year ago!!

Just received the book you spoke of and it is full of interesting facts about the thyroid, diseases and treatments!
Thanks,
Elaine

Dear BellsAngel69,
Please call me on my cell which I will provide to you if you email me at: samanjan@bellsouth.net.

Thanks so much. My email is rorick@frontiernet.net. I will contact you.

Patti

Hello,
I just discovered this thread and am thankful to finally find an active, current community of people on the same journey with hurthle cell. I am 34 and was diagnosed last april ('08) with a nearly 9cm tumor in my left thyroid and had a completion thyroidectomy a couple months later with no further cancer detected. I was pregnant with my daughter while the initial tumor was growing, so I didn't think anything of it. Once the rest of my body slimmed out and my neck was still huge, my doctor told me it was a goiter and to wait until i gained a bunch of weight and felt like a slug, and then he would put me on hormone meds... Needless to say, I found another doctor (though with a newborn i waited too long, several months) and they said they couldn't rule out cancer so I needed to have it removed surgically. I came in to get the stitches out and didn't even think about the results, assuming the worst was over. Then my surgeon broke the news that it was cancer. I took the results home and looked online and read about hurthle cell and it was pretty scary. At first it was like a cloud that hung over me, i was in shock and all these tragic thoughts would rain down and I had a hard time just continuing with normal life... I read the Psalms a lot and took refuge in trusting God's providence, and really felt God's presence in a sweet way in the midst of it all. Sometimes it was a major struggle not to let the really tragic thoughts bombard me, other times i felt at peace thinking through the reality of what it all might mean... Over time thoughts of the cancer became more in the background, not so much a constant companion.
I did the 131 Radiation at UCSF in May '09 and all my tests/thyroglobulin tests were clear until an ultrasound a couple weeks ago. They found a lymph node that was slightly large on the last ultrasound, that had grown significantly again. So next week I will have a thyrogen CT/PET scan to check it out. And i have an appointment for a biopsy of the node in a few weeks. It is right next to my vocal chords and in an area with lots of vessels, so only my surgeon can do the biopsy. I'll repost once I have more info. I have already gone through the shock and grief from the original diagnosis, so it isn't near as scary as the first time. But it is disappointing, and brings those thoughts of "what if" back to the forefront...I guess with hurthle cell I will never be considered "cancer free" so in a way it will always be a companion. It makes every day precious and makes me think deeply about what is most important. So in some ways it is a gift. Anyhow, this is where I am at on the journey right now. Thank you to all of you who have read this and also shared your stories, there is something comforting about hearing others that are going through the same thing.

If anyone wants to get in touch, i would love to talk to you. Here is my email: persimmony@hotmail.com

blessings,
christy

Dear Christy,
I have corresponded with you at your email address provided.
Good luck with your upcoming test. It sounds as though you are now in good hands at UCSF.
You have age in your favor even though your tumor was large. Positivity is key.
I shall keep you in my thoughts.
Elaine

I'm happy to say I have good news...the thyrogen stimulated PET/CT scan came out clear!!! Now I have a biopsy of the growing lymph node in a few weeks and hopefully that will also come out normal. Does anyone know much about the thyrogen PET test regarding detection of HCC?

on your scan results. I just had my first thyrogen injection for my PET scan on Wednesday. I have the second tomorrow, then the PET Wednesday, a low-dose of RAI. Thursday I have off, then Friday a total body scan.

It's awesome your scan was clean. However, I had elevated TSH levels, and my scan was also clean. Now my levels are even higher, thus the impending scans, only six months later. I don't want to crush your hopes, but just because your scan is clean, it doesn't mean you're clean. It usually means if there's something there it's just to small to detect. I have your email addy, I'll send you a message.

My thoughts and prayers are with you. Keep your head up!

Thank you! I'm trying to be both positive and realistic...don't think this type of cancer lets you get your hopes up too high for too long, because there is always another test around the corner and even if it shows nothing suspicious, who knows whether it is accurate or not. But i guess that is how life is for everyone, really - who knows if there might be a fatal car accident around the corner? It helps me to think of it that way sometimes.
Thanks for sharing your experience, let us know how it goes. So your testing lasts a whole week? I had the injections for two days and then a pet/ct whole body scan on the third day with a low dose radioactive injection. not sure why mine was just 3 days and yours 5. Anyhow, please do keep us updated on your results and how you are doing. I'd love to hear from you via email too. It is helpful to know people who understand HCC from the inside...

I just read through all these comments...
I was diagnosed in August by surprise when I went in for thyroid surgery by choice. I'd previous had RAI a few years ago because of a hot nodule. In early 2009, a recheck turning up some suspicious cells, so I decided (on docs advice) to just remove it completely rather than keep having FNA every 6-12 months. My surgery was in early August, and all went well.

Then, the pathology came back, and I got the shock of my life. At 37, my doctor told me that instead of doing this surgery to prevent me from having a cancer risk later in life, I in fact had Hurthle cell cancer, and we wouldn't have found it had I not had surgery until it had grown larger and more dangerous, so I was extremely lucky. It was stage 1, completely contained, but she still wanted to do a round of RAI to be safe.

So I went back off my replacement hormones, my levels dropped like a rock, and took my i-131 over labor day weekend. I also got sick as a dog when I took it! My endo called me every 3 hours over the holiday weekend to make sure I was staying hydrated as everything I ate went right through me: all I could do was drink fluids. She thinks my tsh was so low that I happened to catch a stomach bug on top of the RAI treatment, ick!

I made it through, and had my body scan 10 days later, which came back all clear. Since then, we've been working on getting my hormone levels right, and just feeling better. Mentally everything that happened is JUST hitting me in the past month, because it was all so fast.

I'm so glad to hear from others of you, and so many of you sound so similar to me. I was scared, but put it aside to just deal with the treatment. Now I have the time to really think about all of it. I actually just got off the phone with a social worker who's going to help me with some of the mental recovery. I'm still nervous about things going forward, but try not to dwell.

Please remember you are young and stage I. While scary, this is something that needs monitoring but requires positivity as well.
I would think blood work every 3-6 months and possibly ultrasounds of the neck should keep your worries to a minimum.
Getting the correct level of Synthroid is sometimes tricky, but you will know when you have hit upon the right dose. Too little and you are sluggish. Too much and you feel jittery. Without a thyroid, probably you are on somewhere around 150 mcg. Tweaking or fine tuning is the key. Keep a record if that is helpful.
I had no problems with RAI 131 and felt so fortunate after having read yours and other blogs.
We are lucky to have each other to compare notes with.
Elaine

My testing lasted a whole week because I had both a PET scan and the low-dose RAI body scan. Both scans showed a spot on the inner curve of my stomach, and nothing else. So, now I have to see a GI doctor, have a CT scan of my stomach, and an endoscopy. The docs are thinking that it is thyroid related, because otherwise they have no clue why my TSH level is so high, and I'll be facing yet another problem.

My testing lasted a whole week because I had both a PET scan and the low-dose RAI body scan. Both scans showed a spot on the inner curve of my stomach, and nothing else. So, now I have to see a GI doctor, have a CT scan of my stomach, and an endoscopy. The docs are thinking that it is thyroid related, because otherwise they have no clue why my TSH level is so high, and I'll be facing yet another problem.

Sorry to hear about the spot they found on your stomach. I guess now you have more clues about why your TSH levels have been so high. Have you found another doctor yet? It doesn't seem like the one you have is taking suspicious test results seriously. That would be really frustrating i can imagine. Let us know how your further tests come out, I'm sure you aren't looking forward to them but hopefully they are catching it early. I'm praying for you.

Now they're thiinking it's in my liver, not my stomach. I didn't think it was stomach at all, I knew it had to be something else, but wasn't prepared for what he told me. They're still not positive. I need andoscopy to rule out the stomach, then an MRI and liver biopsy. Not gonna be a fun ride. Looking at possible liver dissection. Going to Johns Hopkins. Anyone that might have been through this or any feedback would be appreciated.

BellsAngel69
I found your posts on the other webiste and it made me feel sad that you thought no one was interested.
The two sites should be combined!
An endoscopy is a piece of cake. You are twilighted and scoped. The fact is that you awaken feeling so good, you think you have been on a long winter nap when, in fact, it has been but a few minutes. It's called propofol.

My sister works in a facility that does scopes at both ends.

The liver biopsy may be a bit more grueling, but I don't have any knowledge of that. I would think that at the very least you are under a local.If you have your choice of the order the tests are performed, try to go for the endoscopy first. That could save picking at your liver.
Go-go-go to Johns Hopkins:)

the MRI and liver biopsy will be done locally, but had to wait till mid-March to get into JOhns Hopkins. I will see Dr. Douglass Ball, an endocrinologist and oncologist. If anyone can sort this out, I have faith John's Hopkins will.

Go Girl!
I'll be there in March as well.
What is the date of your visit?
Elaine

By now you know I'll be there the same week as you, so a meeting is definite!!! I'm so excited to meet my new doctors, and you! Thanks for all your support and great advice. You have been my saving gract through this!!

That was such a sweet thing to say. It almost made me cry. I am glad I could have helped in some small way.
I can't wait to meet you either!

Yeah, looks like there's definitely something there. I have a liver biopsy Monday. I was keeping positive, thinking they'd find something else, and it wasn't my liver, but it looks like it is. I guess I was in a kind of denial.

All I can do is move forward from here. I just pray JOhns Hopkins can help me get this sorted out and give me my life back. Something is making this come back again and again, and they need to find out what it is. I have faith, and I will continue to pray.

Hugs, Patti

We are all praying for a good outcome today for you.
Elaine

The FNA biopsy was negative, but the pathologist knew enough to slice the sample and stain it, and low and behold, the stain showed hurthle cells. Metastasis to the liver is very very rare, 0.5%. I've been researching my ass off and have foud five measly "articles", if you can call them that. There's nothing out there it's so rare. My endocrinologist doesn't want me to wait, has referred me to a liver surgeon, and it looks like they are going to take out the left lobe of my liver. On the good side, the lesion was much smaller than the stupid tech who took the CT scan first reported. He/she said it was 6 x 9 cm, which is pretty big, and it's much smaller.

I'm still heading to Johns Hopkins post surgery for a follow-up and meeting with a new doctor to take over my case.

In researching, I found the hurthle cell cancer of the thyroid is very rare, but the most likely kind to present with a metastasis. 34% of people diagnosed with HCC are likely to have a reocurrence sometime in the future. And once you have one reocurrence you'll probably have more.

So, is it still the "Best kind of cancer to get?" I want to beat every stupid doctor who says that!

The best cancer to get is NO cancer.
Simple thyroid cancer is quite different from HCC. Although originally a sub-type of follicular cancer, as time went by, it became it's own two-headed monster!
By it's very nature, it is recurrent cancer. I think we all need to BOLO at each and every turn with this type.
Our hopes and prayers are with you, Patti.

I am so sorry you all are goig through this. I can't even imagine your situations. I am busy researching over and over again trying to decide where to go and who to do my surgery. I have seen several surgeons and had a pathology result in the FNA (have trachitis now from that) of a predominence of Hurthle cells in one of the three nodules they examined. Yesterday I was "fired" from a major cancer center here in Florida for asking too many questions. I have severe and extensive allergies which they were not addressing or entering into the electronic medical filing system. They did not return a call in three weeks prior to FNA which i went to by myself (2 1/2 hr drive each way),and i have had three trips so far. Now,although total thoriodectomy is recommended, I now have no surgeon because they have identified me as a problem patient (think of Elaine in Seinfeld episode). The Cancer center experience was so cold, abusive and truly horrible. i am scared, please help!I have had thyroid prob's since 1993 and I have multinoduar goiter and hasimotos DX. Should i just have the surgery here close to home and forget the big cancer centers?

I need a compassionate & expert surgeon to get through all of this.

Hi,
I don't know where in Florida the Mayo Clinic is located, but according to their web site they have a branch in Florida. I have referred to their site often since I also have a Hurthle Cell diagnosis. They seem to be specialists in treating this form of cancer. I had a total thyroidectomy in July 09 followed by RAI-131 in September.

I wish you well and hope you find a caring group of doctors very soon.

Hi,
I don't know where in Florida the Mayo Clinic is located, but according to their web site they have a branch in Florida. I have referred to their site often since I also have a Hurthle Cell diagnosis. They seem to be specialists in treating this form of cancer. I had a total thyroidectomy in July 09 followed by RAI-131 in September.

I wish you well and hope you find a caring group of doctors very soon.

I actually went to this Mayo (a satellite) years ago and was treated poorly when I was so very deathly ill. I have been to the main Mayo and there (at that time) was a huge difference in medical care. I had very good care in Rochester! i have thought about going back to the Jacksonville facility but have my reservations as this is a "satellite of the main Mayo in Rochester. I am almost afraid of having any surgery here in Florida as it can be a different world down here sometimes. I hope the other people you referred did well? I hope so!
Thanks for the info and kind response! I hope this note finds you feeling fairly well today! Where do you live and where did you have surgery and treatment?
Smiles,
Lois

Hi Lois,

I'm sorry, I used a poor choice of words in "referred". I have referred only to their web site in my search of knowledge about this disease, I have never referred anyone to their hospital. I have read that they are forerunners in treatment of this disease, but I don't know that, have only read it.

I think Samanjan seems to have a great deal of knowledge of this disease and she has dealt with it for a time from her posts. With Hurthle Cell, reoccurrence and metastasis are possible. My tumor was attached to my trachea and Hurthle Cell responds to the radioiodine less than 10% of the time I'm told, so diligence is key with this diagnosis.

I had my surgery and follow-up treatment in Charleston, WV at a hospital that is supposed to be a leader in cancer research and treatment in my area. My endo did not have a lot of experience with this thyroid cancer, so my surgeon has agreed to take my aftercare and I am grateful for that. I was first diagnosed with a goiter, and a fine needle aspiration was inconclusive as well, so I was told we could watch it for 6 months or err on the side of caution and have the surgery. My surgeon told me he would do pathology on the tumor during the surgery and if it appeared malignant, he would do a total thyroidectomy, so I had only the one surgery. My tumor was in the right lobe. I am still very sluggish and feel that I am in a fog most days, but I am praying for better days ahead.

I have a friend who has just returned home from Johns Hopkins after surgery for breast cancer and chemo therapy; she seems to be doing very well. I think I would feel as you do about a satellite connection for medical care; would not be my first choice if I had the ability to do something else.

I wish you well and please let me know your progress, you will be in my thoughts.

Shelia

I had a lesion found on my liver about a year ago and it has grown. I also have other growths/polyps "things that have been idenified for surgery on my cervix and sinuses but i didn't have the surgery done due to my serious/extensive allergic reactions to medications. I am very afraid of the anesethsia and need appripriate medical care. I am thinking of traveling for surgery and hopefully excellent care the first time around for my first surgery -total thyroidectomy. Any suggestions where i can best be treated? i do not know yet if i have Hurthle cell cancer or a Hurthle cell beign lesion. I had a predominance of hurthle cells on the FNA biopsy in one of three samples. I have not been feeling well this past year and no doctor can explain my horrible rash which i have had for over a year. It is terrible. Help?

I had my first follow-up Feb. 10, the ultrasound showed no new nodules or tumors and the surgeon said the surgery along with the radioiodine had done what he intended. I will have blood work soon, my TSH levels are too high, but hopefully they will come down with an increase in meds. I feel very blessed at this time, but like so many others I can't become too confident that it might not be back, since that is the history of the Hurthle Cell. My endo. was not familiar with this cancer, so my surgeon will handle my follow-up care completely. I am fine except for lack of energy and a cough I can't seem to shake. I have been told to give myself at least a year to feel normal again, so we'll see.

I sincerely hope you can find doctors that can handle your allergic concerns and give you the peace of mind needed to proceed with the procedures necessary. Good luck and let me know how your search goes.

Too many questions?????????? You must be kidding. I would find a new doctor asap. I have allergies as well.
I go to Hopkins for treatment and live in south Florida.
I have also read medical textbooks and if there is a predominance of Hurthle cells, you need a surgeon right away. Any mention in your pathology report about colloidal cells?
If you need a referral I will try to get you some help.
My personal opinion is this, if interested, keep looking for someone else.

I don't know why but I couldn't find this site again. I guess I have to log in back here to see if anyone wrote me...the message isn't sent to my email or an email alert is not sent? I read everything I could get my hands on concerning Hurthle cell and from what I read with a FNA biopsy result of a "predominence of Hurthle cells" some docotrs reported 2/3rds are cancerous after final pathology. I don't know if I read that correctly. I am just so overwhlemed and my throat & vioce have been killing me since the biopsy. My local doctor said i have trachitis and i am taking prednisone and it is not helping. I am trying to get all my records etc togther and sent from Moffitt. Who do you see at Hopkins? I think I read somewhere someone say a Dr. Bell?

The FNA of the right inferior nodule said exactly "Cellular specimen with prominent Hurthle cell features, consistent with Hurthle cell neoplasm". General Catagory "other"

The other area-the isthmus said "colloid nodule with cystic degeneration (that was the thing that was sticking out of my neck and brought me into all of this, and they drained part of it, & it is coming back) General Catagory "No evidence of malignancy in this specimen".

The interpretation of the third left thyroid nodule was "beign thyroid nodule, favor colloid nodule". "General Catagory "No evidence of malignancy in this specimen".

All results said there was satisfactory specimen for evaluation.

I don't know what to do. I have an appointment to go back to MD Anderson in Orlando, but I do not know if that surgeon will perform the surgery now that I had the biopsies at Moffitt. His nurse said he wouldn't do the surgery unless I had everything done there. She told me that the eve before my FNA biopsy at Moffitt. It does seem that now that I have a positive biopsy, the surgeon might want to do the surgery. This Hurthle cell finding was accually found accidently. The hurthle cell nodule was biopsied as a result of my complaining I wanted them to do the right areas, and the radiologist requesting permission to do the other ultrasound hypoechoic areas, which were reported as hyperechoic and beign on the local hospitals ultrasound reports.

My allergies are extrmely extensive and severe and I have almost died and been in very serious health following allergic reactions to medication and mistakes made at hospitals. I am now in shell shock because I do not want any more bad experiences like I just had at Moffitt. Help! My local doctotr says I have to do something soon, and no health care facility should ever have treated me in such a demeaning fashion. I agree.

I do not know anywhere else where I can talk to someone who knows about all this. Please send me whatever information you might have please! Thank you for writing back to me! I just wrote another note with the answers to your other questions. I want to make sure that when they do the surgery they are careful with medications/anestetics and my allergist will do special testing for me before hand also. I also want to make sure the do the operation correctly, looking at everything. So far the surrounding areas of my thyroid have not been looked at with ultrasound, MRI or anything else.
Lois

First, let me say this, most hurthle cell, actually thyroid cancer, is found inadvertently. It is referred to as the accidental type cancer. Usually they are looking for something else. In my case I had a huge tumor,which I found.
It is aggressive, recurrent,and sneaky.
I cannot believe you have not had an ultrasound. That should have been the first thing, not FNA. YOU are your own best health advocate.
Are you able to travel for treatment in another state?
Write me at samanjan@bellsouth.net for numbers for the following:
referral-Dr. Dave Cooper, Johns Hopkins, Chief of Endocrinology - secretary, Chrissy
Surgeon - Chief of Endocrine surgery - Dr. Martha Zeiger. Her secretary is Catherine.
Elaine

Perhaps my typing was a bit unclear. I actually had 1 neck (small portion) and 1 thyroid ultrasounds at the end of December 2009. These were ordered because I had found this new lump below my Adams apple which hurt and was causing swallowing problems problems,etc just before the holidays. My internist referred me to a surgeon. I actually went to an ENT doc and then a general surgeon who I know, and both said possibly it might involve removing the thyroid as it could be attached. The ENT surgeon could do the surgery, but because of my severe allergies and fear of complications as I am disabled and ill from other health conditions and have severe allergies, I decided to make appointments at MD Anderson & Moffitt. The only reason I did this was because I was trying to get in right away with one of them, and after the MD Anderson appointment I decided to get the Moffitt opinion as well, as I had already waited so long for that appointment. The Moffitt surgeon led me to believe that I might not have to have thyroid surgery and the lump could have been a lymph node in my neck, so I went and had a new ultrasound there (which reported different findings from the ultrasound report done only 1 month before done at my local hospital). Right after the new ultrasound at Moffitt, I then had an ultrasound FNA biopsy performed by a radiologist with pathologist in the room and also another doctor (it is a teaching facility) and assistant was present. They did three areas and two of those areas were not large in size but solid appearing, and one was the lump on my front of my neck, that was drained and then biopsied. They were not going to do the right or left nodules originally and had to get permission to do that also. I had a lot of lidocaine needles and 3-4 FNA specimens from each area. It was extensive but the radiologist wanted to be sure he had adequate specimens. My neck & throat are still very sore. I may actually have strep, and my doctor who I saw again yesterday gave me an RX now for antibiotic, Levequin (the only only I can take somewhat safely that I know of).

What I did not have was any further testing of my neck areas or lymph node areas in my neck which has been very sore all along and where the lump was actually located. I am not a good typist so I thought I would clarify. Okay the nodule that had a hurthle cell FNA finding, was actually still not very large 1.2-1.5 cm ? I think) and the surgeon over at Moffitt said normally they would not even biopsy it but usually watch it. Because I had the FNA biopsy and it showed Hurthle cells, the recommendation now is the surgery.

I spoke with a woman down here in Florida who refers patients to John Hopkins (she is listed at the John Hopkins website) and helps patients find the right doctor. She emailed me information and I guess her job is to set things up, forward test results etc. It was very nice of her to send me information right away and offer help.

I did want to hear back from you though as it seems you know from personal experience who would be the best doctors to see there. thank you so very much for responding back to me so quickly with your information. Thank you, thank you, thank you!

I can not thank you enough for your extrtemely kind and informative phone call. I stupidly (not really but you get my drift) forgot to get your phone number, name so when I called I was like "ah, errr, I just talked to someone in Florida who had surgery treatment here but I don't know their name, had something to do with Hurthle cell! Well, I am reading the suggested reading you advised me to research. It is hard for me to read all at once but I get the message, this is nothing to fool around with. The secretary at Dr. Zeigler's office was nice and very appropriate. I will take today to determine if I can actually feel well enough to be traveling back and forth. Thank goodness for my frequent traveler miles, i.e.!!!, that is if American Airlines goes there? I hope you are feeling better after your doc app't. Seems I might have picked up strep. I have definitely turned all of this over to my higher power so "God's will be done", i am not that powerful to keep at this. I can't deal with the incompetency of my recent medical visit although I am grateful for an excellent radiologist and pathology result! I do believe you called me for a reason and thank you very much!

Well, I just want to say THANK YOU AGAIN!!! I hope we can stay in touch, you definitely were a Godsend for me.

I truly feel better already!!!
Loispol1

How are you doing and how is your mother? I went back to MDAnderson yesterday and today but now I am wondering it I should make the effort and travel for another opinion as this could be so serious, I do want to be sure the surgery is done right etc. I had an ultrasound of my neck and thyroid again today over in Orlando. I did not have to have the FNA of lymph nodes but I was also unimpressed compared with the radilogy department over at Moffitt. Seems where one facility is lacking the other was great. The Orlando surgeon said 15 per cent chance of hurthle cell carcinoma from FNA, but this is not what I have been reading, especially with the report I received. What is your opinion concerning the percentages? Anyway thanks again for your help and hope all is still well with you!

Anyway, I would love to hear from you again & smiles!
Lois

How are you doing and how is your mother? I went back to MDAnderson yesterday and today but now I am wondering it I should make the effort and travel for another opinion as this could be so serious, I do want to be sure the surgery is done right etc. I had an ultrasound of my neck and thyroid again today over in Orlando. I did not have to have the FNA of lymph nodes but I was also unimpressed compared with the radilogy department over at Moffitt. Seems where one facility is lacking the other was great. The Orlando surgeon said 15 per cent chance of hurthle cell carcinoma from FNA, but this is not what I have been reading, especially with the report I received. What is your opinion concerning the percentages? Anyway thanks again for your help and hope all is still well with you!

Anyway, I would love to hear from you again & smiles!
Lois

How are you doing and how is your mother? I went back to MDAnderson yesterday and today but now I am wondering it I should make the effort and travel for another opinion as this could be so serious, I do want to be sure the surgery is done right etc. I had an ultrasound of my neck and thyroid again today over in Orlando. I did not have to have the FNA of lymph nodes but I was also unimpressed compared with the radilogy department over at Moffitt. Seems where one facility is lacking the other was great. The Orlando surgeon said 15 per cent chance of hurthle cell carcinoma from FNA, but this is not what I have been reading, especially with the report I received. What is your opinion concerning the percentages? Anyway thanks again for your help and hope all is still well with you!

Anyway, I would love to hear from you again & smiles!
Lois

I am trying to get through this medical maze. I am almost recovered from my personal bad experience at Mofit. I can't remember everything you told me before, as I was in a medical "stupor". I am now scheduled for surgery at MDAnderson Orlando. I think the surgeon is very good but not sure of the Orlando Regional medical system which does all the testing - pathology reports? I do not have your phone number and would love to call you back. I still have time to make additional decisions?

I wish "time" was not such a factor in all of Hurthle stuff!

Hi thank you for yur message! I am just getting used to this web site, so I am so slow in responding. Sorry about that. I do not know much yet about how it is after the surgery. I did read that most docs try to keep the TSH suppressed to low or nearly detectable levels after the surgery & with hurthle cell dx. Mine have been at nearly detectable levels since '94 to suppress the large goiter and growing nodules, i have had all the way since back then. I do not have any side effects when my TSH is lower, actually it is the opposite. When it is not really low I have zero energy, and all the worse symptoms of hypothyroidism, however, I still have my multinodular thyroid and i have been diagnosed with Hastimotos thyroiditis, so there is that also. I have not felt very well since last may when my thyroid medication was reduced, but there have different problems with the medication since then so that could also be a reason, the type I take was reformulated and then in very short supply.

I really hope you get to feeling better really soon, it is hard to go day in and day out feeling zapped. Thank you so much for writng me, finding this support discussion area has been a blessing!
Smiles,
Lois

Elaine is such a Godsend,isn't she? She has been my guardian angel since I found this site. Thought I didn't get hooked up at Johns Hopkins with her doctor, she gave me Drs. names and told me to get in whatever it took. Luckily, my endocrinologist studied at JH, so he was able to get me a referral with the Dr. he trained with. I wish you the best. If anyone can help you JH will!!!

Hugs, Patti

Elaine is such a Godsend,isn't she? She has been my guardian angel since I found this site. Thought I didn't get hooked up at Johns Hopkins with her doctor, she gave me Drs. names and told me to get in whatever it took. Luckily, my endocrinologist studied at JH, so he was able to get me a referral with the Dr. he trained with. I wish you the best. If anyone can help you JH will!!!

Hugs, Patti

Yes, she is great and I actually was so stressed out I didn't remember her name! I thought of going to John Hopkins and I may still in the future. I went back to MD Anderson in Orlando and after my bad experience over in Tampa recently, and with my total exhaustion and also being single and alone, I decided to go with the surgeon in Orlando. He apparently is gifted and was very kind and concerned yesterday and brought his staff in to meet me and reassure me they would be taking every precaution with my allergies. I also spoke with someone who had surgery with him recently, they had nothing but praise. The Orlando MD Anderson Cancer center works with the University of Texas MD Anderson Cancer Center with conference calling and treatment recommendations. Apparently every case goes through this. If they can't be treated with something in Orland, then a patient is sent down to the Texas facility. Anyway I am not well enough to travel by myself right now for surgery and with everything considered, I feel this surgeon (ear, nose and throat) is very knowledgeable and will be very careful. He does a lot of thyroid surgeries. He is actually very concerned with the lump on the isthmus (shows on my neck) although that area came back benign in the FNA. Today he is having more ultrasounds done of my thyroid again and neck and possible neck lymph node biopsy if indicated. I feel good that he is doing this. I will have another app't with him and then all the testing and anesthesiologist about a week before and I hope to have anesthesia testing done by my allergist in the meantime. This facility is latex free which is a blessing for me, as allergic as I am.

Sounds crazy but I am more afraid of the operation-that is the anesthesia and my allergies than anything else. Are you going to JH soon? It seems that is the best place or one of the best places to go with Hurthle cell. Please keep me posted!

Take care & smiles, thanks for the message!
Lois

Yes, she is great and I actually was so stressed out i didn't remeber her name! I thought of going to John Hopkins and i may still in the future. I went back to MDAnderson in Orlando and after my bad experience over in Tampa recently and my total exhaustion and also being single and alone, I decided to go with the surgeon in Orlando. He apparantly is gifted and was very kind and concerned yesterday and brought his staff in to meet me and reassure me they would be taking every precaution with my allergies. The Orlando MDAnderson works with the University of Texas MDAnderson with conference calling and treatment recommendations. Apparantly every case goes throuhg this. If they can't be treated with something in Orlando then a patient is sent down to the Texas facility. Anyway I am not well enough to travel by myslef right now for surgery and with everything considered, I feel this surgeon (ear, nose and throat) is very knowledeable and careful. He is actually very concerned with the lump on the isthmus (shows on my neck) althought that area came back beign. Today he is having more ultrasounds done of my thyroid and neck and possible neck lymph node biopsy if indicated. I feel good that he is doing this. I will have another app't with him and then all the testing and anestetholgist about a week before and I hope to have anestehsia testing done by my allergist in the mean time. This facility is latex free which is a blessing for me, as allergic as I am.

Sounds crazy but i am more afraid of the operation-that is the anesthesia and my allergies than anything else. Are you going to JH soon? It seem that is the best place or one of the best places to go with Hurthle cell.

I'm glad you finally found a surgeon you are comfortable with. No matter how scared of surgery you are, you have to have faith everything will be ok. You have to go in positive and stay positive. You need a TT, no way around it. I can almost guarantee you, after your surgery and RAI treatment, once they get your meds adjusted right, you will feel 100% better. You seem to have many things going on at once, not just HCC, but Hashimoto's too. With your thyroid gone, you will have a clean slate. You may be surprised and find you'll feel better than you have in years.

I'm not saying it's going to be smooth sailing all the way as it will take time to adjust your meds, but you will get there.

I'm 9 days post surgery for a liver resection. My HCC first went to my hip bone, then my liver, and there was nothing I could do to stop it. I just pray now that it is in remission for a very long time.

My email is: rorick@frontiernet.net if you'd like to talk more person to person.

Stay strong, you can beat this!!!

Lois,

I have been reading everyone's emails in this site and was recently diagnosed with Hurthle Cell thyroid cancer. Mine was 3.5 x 3.3 x 3.1 and took 3 hours to remove. They didn't find it was cancer until a week later and still have to go back in and now take the right side out in April. My TSH was 4.53 before surgery and 5.65 a couple weeks after so they started me on thyroid meds until the next surgery. I have been feeling really run down but have gotten some energy back. Lately have been feeling anxious and "snappy" at times. They also thought my thyroid was Hastimotos thyroiditis after they removed the left side. Still in the early stages of everything, needing the other surgery and then 3 weeks of the low iodine diet prior to RAI in June. I am concerned about my energy then and figuring out what I can eat. I work as a RN and work 12 hour shifts, of course hard to do without any energy.

I hope things get better for you and you are right that this support discussion is very helpful. I have learned alot just from reading everyone's responses but still feel I don't know alot about this cancer. My endocrinologist researched Hurthle cell cancers when she worked at Mayo but said it was hard finding out any information since there were
not many cases out there.

Hope that energy returns soon.

Karleen

You might ask you endocrinologist or nuclear medicine physician about taking shots of thyrogen instead of not taking your thyroid replacement harmone prior to your RAI treatment. It eliminates the perioed of hypothyroidism which apparently is very difficult to deal with for many people. I had the choice of one of the other and after talking to my endocrinologist and my head and neck cancer surgeon(a well regarded expert on thyroid cancer at U Cal San Francisco), I chose to take the Thyrogen. I had one shot on Monday, another on Tue, had the dose of Radioactive Iodine on Wed. and a whole body scan on the following Wed. I was fortunate in that it appears that the RAI was taken up by the Hurthle Cell cancer since this happens in only about 20% of cases of Hurthle Cell Cancer. I had what appeared to be a metastisis in a lymph node below my left breast bone and some uptake in my thyroid bed which was likely residual thyroid tissue. I will have another whole body scan in June and a PET scan in June to see if there is any indication of cancer. I also had a TSH test the week of the RAI and another in January. The January level was near zero which was great. I will have another TSH blood test in May and see my endocrinologist. I will see my surgeon in July--she did a sonogram on my neck in January for a baseline and will do another in July--again to look for any signs of remaining cancer. I think I will continue to have follow up test every 6 months for a couple of years then perhaps go to once a year--basically to look for a recurrance which happens in 34% of the cases.

The low iodine diet which I had for 6 weeks prior to the RAI was limiting but not too terrible--the diet on the Thyroid Cancer's Survivors website is straight forward and reasonably easy to follow.

Hope my experiences are helpful to you. Doctors are different and the details can vary but I think the pattern treatment is the same.

I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.

Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.

Smiles,
Lois

Lois,

Just got back from hematology and found my hemoglobin is back up to 10.9. It had dropped to 9 after taking out the left side of my thyroid. I will have my right side removed on April 16th. My biopsy also came back as a Hurthle cell neoplasm. The pathology took a week, as Hurthle cells are hard for the lab, and then it came back as Hurthle cell cancer. Since it was past the week of the original surgery they had to wait 2 months to take the rest out. I can understand it because my throat was so swollen, couldn't eat anything but liquids for a week after the first surgery and still felt like it was hard to breath at times.

I am looking into leave of absence after the next surgery and around the time of the RAI. Unfortunately I have to work. I get child support for my kids but one will be done in another year and the other one is a sophomore. He left me alot of debt and still trying to climb out of the hole. Plus he rarely sees the kids. The costs of all this are not helping. My first hospital bill was over 27k and I have to pay $1,900. I was a stay at home mom once the kids were born and had to go back to work after the divorce. Being a nurse helps where you don't have to work 40 hours a week but the 12 hour shifts are killers. I have talked to my boss about going down to 8 hours after surgery and she was open to that. It helps having a great and understanding boss. I have only worked at the hospital for 10 years but love it there. I really can have apathy for my patients now when they feel short of breath etc.

Will all your allergies and health issues, that has to be scary. Especially when you were talking about the breathing issue and it is going to get swollen around your windpipe when removing the thyroid. I am only 48, going to be 49 this summer, and have never had health issues besides arthritis in the knees and now tennis elbow from lifting patients. Things have to get better! It is shocking when you hear the word cancer and it is hard to fight when you feel tired and weak. I have seen many fighters in the hospital I work in and they help push me on. We do alot of bone marrow transplants and those people are something. To be able to put them through what they have to go through and being stuck in that hospital room for months sometimes. I couldn't do that, but then I guess you can do anything when you need to.

What was that song years ago, "No Worries, Be Happy Now".

Karleen

Lois,

Just got back from hematology and found my hemoglobin is back up to 10.9. It had dropped to 9 after taking out the left side of my thyroid. I will have my right side removed on April 16th. My biopsy also came back as a Hurthle cell neoplasm. The pathology took a week, as Hurthle cells are hard for the lab, and then it came back as Hurthle cell cancer. Since it was past the week of the original surgery they had to wait 2 months to take the rest out. I can understand it because my throat was so swollen, couldn't eat anything but liquids for a week after the first surgery and still felt like it was hard to breath at times.

I am looking into leave of absence after the next surgery and around the time of the RAI. Unfortunately I have to work. I get child support for my kids but one will be done in another year and the other one is a sophomore. He left me alot of debt and still trying to climb out of the hole. Plus he rarely sees the kids. The costs of all this are not helping. My first hospital bill was over 27k and I have to pay $1,900. I was a stay at home mom once the kids were born and had to go back to work after the divorce. Being a nurse helps where you don't have to work 40 hours a week but the 12 hour shifts are killers. I have talked to my boss about going down to 8 hours after surgery and she was open to that. It helps having a great and understanding boss. I have only worked at the hospital for 10 years but love it there. I really can have apathy for my patients now when they feel short of breath etc.

Will all your allergies and health issues, that has to be scary. Especially when you were talking about the breathing issue and it is going to get swollen around your windpipe when removing the thyroid. I am only 48, going to be 49 this summer, and have never had health issues besides arthritis in the knees and now tennis elbow from lifting patients. Things have to get better! It is shocking when you hear the word cancer and it is hard to fight when you feel tired and weak. I have seen many fighters in the hospital I work in and they help push me on. We do alot of bone marrow transplants and those people are something. To be able to put them through what they have to go through and being stuck in that hospital room for months sometimes. I couldn't do that, but then I guess you can do anything when you need to.

What was that song years ago, "No Worries, Be Happy Now".

Karleen

Lois,

Just got back from hematology and found my hemoglobin is back up to 10.9. It had dropped to 9 after taking out the left side of my thyroid. I will have my right side removed on April 16th. My biopsy also came back as a Hurthle cell neoplasm. The pathology took a week, as Hurthle cells are hard for the lab, and then it came back as Hurthle cell cancer. Since it was past the week of the original surgery they had to wait 2 months to take the rest out. I can understand it because my throat was so swollen, couldn't eat anything but liquids for a week after the first surgery and still felt like it was hard to breath at times.

I am looking into leave of absence after the next surgery and around the time of the RAI. Unfortunately I have to work. I get child support for my kids but one will be done in another year and the other one is a sophomore. He left me alot of debt and still trying to climb out of the hole. Plus he rarely sees the kids. The costs of all this are not helping. My first hospital bill was over 27k and I have to pay $1,900. I was a stay at home mom once the kids were born and had to go back to work after the divorce. Being a nurse helps where you don't have to work 40 hours a week but the 12 hour shifts are killers. I have talked to my boss about going down to 8 hours after surgery and she was open to that. It helps having a great and understanding boss. I have only worked at the hospital for 10 years but love it there. I really can have apathy for my patients now when they feel short of breath etc.

Will all your allergies and health issues, that has to be scary. Especially when you were talking about the breathing issue and it is going to get swollen around your windpipe when removing the thyroid. I am only 48, going to be 49 this summer, and have never had health issues besides arthritis in the knees and now tennis elbow from lifting patients. Things have to get better! It is shocking when you hear the word cancer and it is hard to fight when you feel tired and weak. I have seen many fighters in the hospital I work in and they help push me on. We do alot of bone marrow transplants and those people are something. To be able to put them through what they have to go through and being stuck in that hospital room for months sometimes. I couldn't do that, but then I guess you can do anything when you need to.

What was that song years ago, "No Worries, Be Happy Now".

Karleen

I am behind of all of you still needing to have my surgery. I just read a really good review about MDAnderson in Texas, and that made me feel better about going to the one in Orlando as they coordinate patient treatment plans. I was a single parent with a pain ex who made my life more difficult. It was really tough especially financially, so I do understand! Glad you have an understanding boss! I have been through some very hellish freaky extremely painful times as a very ill person. I have a real fear of ever becoming that ill again! Not being able to breath always makes me feel scared, with the asthma and throat swelling at times, guess it is best not to talk about it right now. It is one of the worst feelings, but so is extreme pain.

If your hemoglobin dropped, what does that mean you were anemic? The lump in the front of my neck is uncomfortable and coming back now (they drained the part that was liquid). Well I have to get ready for my hour+ trip to Orlando, I don't want to be late! Thanks for writing me. This seems to be the best place I can find for support and answers, referrals, treatment recommendations etc! I am so glad I found it!
Take care & smiles,
Lois

Hope your trip went well Lois. I can't imagine driving that far for anything! I will drive up north to see my parents but that is a 3 1/2 hour trip. I live in the Twin Cities of MN and they live up on the Iron Range. My doctor found my enlarged thyroid and that I had iron deficiency anemia all at the same time. Have been taking Iron to get it up but then lost a unit of blood when I had my surgery which dipped it to 9. Now I am back up to 10.9, which is higher then when they found it so the Iron pills are working. My endocrinologist also found I was vitamin D deficient, which doesn't surprise me since I work the night shift. Need that sunshine, which is also hard sometimes in Minnesota.

Support is important. Sometimes I feel all alone, I have siblings near by but they are busy with their own lives as is everyone else. Sometimes you just need to talk to someone. I am involved with my younger sons sports but basketball just finished and I usually don't go to track meets. They last forever. This summer he does baseball which I usually help with coaching and scorebook. Hopefully I will feel up to it this summer.

Take care,

Karleen

I am so grateful to have found this website and information about Hurthle cell cancer. I have spent over a week straight researching the subject and information is very sparse. I occasionally find helpful information only to find that some it contradicts the information I have been trying to find, which is, exactly what percentage of FNA Hurthle cell neoplasms turn out to be Hurthle cell carcinoma. I have read all different percentages. This would have been helpful information in making my decisions for surgery. The surgeon I am seeing said only 15 % but I have read recent it is higher, more like 30%. And then there are all the factors built into that.
There is some good info. out there and I especially like what was written at emedicne and even the mayo website gives some basic helpful info. I ran out of ink again in my printer so I think my researching has come to an end. I went back to MDAnderson in Orlando yesterday and have made the date for my thyroid operation. Because of all my thyroid issues, supposed Hasimotos DX, my age which is 59 and all the nodules over 7, plus my medical condition - we decided to take the whole thyroid out the first time...which is what all the doctors i saw suggested. i have been on high dose thyroid medication since 1993 or so and my thyroid probably does not function on its own. I have severe allergies and when they treated me with compassion, kindness and offering precautions concerning the allergies I decided to hand the whole thing over to the experts there. I had thought of traveling to John Hopkins or elsewhere but i am just not well enough to do so. Although i am on thyroid medication I have little energy and do not feel well, i do have other medical problems. Anyway i hope i have made the right decision. I only had my thyroid FNA come back with the dx of Hurthe cell neoplasm. Today the surgeon is having me have another ultrasound of my thyroid and then my neck and possible FNA of neck lymph nodes if anything looks suspicious. I am truly afraid of surgery given my history of severe reactions to medications and breathing problems etc. I am going to have to get through this somehow. Part of me just wants the whole thing to go away; I keep thinking there is a percentage/chance, that I do not have cancer yet. I now this is a serious matter and I cannot afford to put off the surgery any longer. I am also allergic to iodine so there is that also which could be a problem later on.

Anyway, everyone here has been super nice and helpful. They are all very courageous, by comparison I am truly lacking in that area currently. i am so sorry you are having to deal with this and also working so much. Did you take time off after your surgery, is it possible for you to take a medical leave until you are back on your feet, or maybe work less hours? Of course I don't know your situation, but I would think that now is a time you would not want to get run down. Thank you so much for your very kind and helpful note. I hope today was a little bit better for you than yesterday.

Smiles,
Lois

Just returned from Johns Hpkins yesterday after a week. If you need me, contact me at samanjan@bellsouth.net.
Best of luck and I look forward to hearing from you!

I was diagnosed in July 09 with Hurthle Cell Carcinoma, stage 3 and would like to correspond with you if that is possible. I am very interested in your visit to Johns Hopkins and your overall experience with this cancer.

Thank you,
Shelia

Please feel free to write me at my email address: samanjan@bellsouth.net
I am also stage III. It is easier to deal with this if you think of this type of cancer like you would think of Herpes. It is a gift that keeps on giving and never really goes away. It may hibernate for awhile, but it's usually there. It has a possible shelf life of 15 years. I have had over one year to research and it's not that "good" type of thyroid cancer. Best not to dwell on it, rather deal with it. Stay in the moment too!
Hopkins is awesome and I cannot say enough positive things about my experience there.
I just returned Saturday after spending one week there for various treatments.
I look forward to hearing from you.
Elaine

But eneded up with Follicular Cancer of the Thyroid. Studies that I have read say that it is between 30 - 45% malignant, but don't say how many of them are Hurthle cell cancers. The best way to find out is to have it removed and a dissection biopsy done! Hugs as you go through this!

Can you post your pathology findings and let me review?
Hurthle cell cancer can ONLE be made after a removal of the thyroid and final pathology report.

Final Diagnosis:
Thyroid Gland Left Lobe Lobectomy 6 gms
A. Follicular Oncocytic Carcinoma (Hurthle Cell Carcinoma), 1.5 CM's with Capsular and Extensive Vascular Invasion (See comment)
B. Extrathyroidal extension is Absent
C. Metastatic Follicular Oncocytic Carcinoma in one of 3 lymph nodes
D. Normocellular Parathyroid Tissue
E. Tumor Present at the inked (green ) Margin of the Resection (capsular surface
F. AJCC Ptthologice TNM Stage pT1N1aMx

Comment: As indicated above the 1.5 cm left thyroid lobe nodule represents an oncocytic follicular carcinomal with capsular and vascular invasion. The presence of vascular invastion is confirmed by immunohistochemical staining for CD31 preformed on blocks C and E. The <0.1 focus of metastatic carcinoma on one parithyroid lymph node is best appreciated on teh H & E recut and CD31 Immunohistiochemical stains preformed.

Can you post your pathology findings and let me review?
Hurthle cell cancer can ONLY be made after a removal of the thyroid and final pathology report.

The T1 sounds good, but I would keep an eye on the N1.
Was any HCC found inside?
Finding anything inside a lymph on presentation should put you on high alert for the follow -ups. Otherwise it looks geat!
All the best,
Elaine

Not sure what that means???? Can you explain! Still have to have the body scen for mets........ also to see if theh Herthle cell will take up iodine. Visit to endo's office was pretty discouraging right now. She is most concerned about it being very vascular,that I am above 45 and it was not encapsulated.

All I was asking was this, any hurthle cells found inside the lymph node as noted on the TNM stage factor?
T1N1, etc.

1 lymph node out of 3. <0.1 cm in size. The surgeon did not feel that it was inside the lymph node itself, but on the surface and caused by frictional contact with the tumor.

Tell me a little about when you were diagnosed, your surgery dates, and when you start the diet??? I was diagnosed ono March 10'th. Had half of my Thyroid out March 4'th and March 12'th. Starting to go off my meds on Monday. Test shot starts the 26'th. I too was diagnosed with Hurthle Cell Cancer. I got information on the diet from the Thyroid Cancer Survivor's website....they even have a cookbook on it.

Tell me a little about when you were diagnosed, your surgery dates, and when you start the diet??? I was diagnosed ono March 10'th. Had half of my Thyroid out March 4'th and March 12'th. Starting to go off my meds on Monday. Test shot starts the 26'th. I too was diagnosed with Hurthle Cell Cancer. I got information on the diet from the Thyroid Cancer Survivor's website....they even have a cookbook on it.

Tell me a little about when you were diagnosed, your surgery dates, and when you start the diet??? I was diagnosed ono March 10'th. Had half of my Thyroid out March 4'th and March 12'th. Starting to go off my meds on Monday. Test shot starts the 26'th. I too was diagnosed with Hurthle Cell Cancer. I got information on the diet from the Thyroid Cancer Survivor's website....they even have a cookbook on it.

I had an FNA of Hurthle cell neoplasm confirmed by two different pathologists/places viewing the same slides. I can't have my TT surgery now, it was postponed, because I am having some other possibly serious problems, possible blood clot in my portal vein and abnormal blood tests. I am trying to have a CT scan or MRA but allergies to contrast and abnormal blood tests are holding this up. FNA said "cellular specimen with prominent hurthle cell features, consistent with Hurthle cell neoplasm" the second said "suspicious for follicular neoplasm with hurthle cell features", and "our diagnosis is in exact agreement with that rendered at.. (other place)".I think this means I have a Hurthle cell adenoma or hurthle cell carcinoma? Could I have my thyroid out and it would not be cancer? Do Hurthle cell adenomas turn malignant in time? I wrote about my dilemma in a separate area here but had no responses. I definitely feel alone in this. Before I thought I would just be dealing with severe allergies going into surgery, but now this!Do I really need surgery? The FNA nodule found with Hurthle cell was small .7 cm. Later ultrasound, after the FNA, said the largest nodule in that area was 1.4mm? Did it shrink? Did they miss it? It said the other nodules all had irregular margins/borders but were under 1 cm? Two other areas were tested during the FNA and showed benign lesions. I have Hasimotos also. Anyone have any ideas/information concerning my questions above? If it is a small area, and malignant, would it be less likely to be spreading?

My FNA was the same as yours and was Hurthle cell carcinoma. I would run to the first surgeon and get the thyroid completely removed if I were you. This is a quick growing, aggressive type of recurrent thyroid cancer. Why the wait?
I know you have issues but HCC is a killer when left untreated.
Elaine

I had surgery scheduled for this past Friday and although I was about as nervous as a person could be due to fear of the anesthesia only, not the surgery, I got sick as a dog for about 5 days, had elevated white & red blood counts, abnoral bun, creatine bun/creatine ratios, some other abnormal tests and had severe abdominal pain and diarrhea. I lost about 5 pounds in two days. Also had/have chest pain. My GP sent me for ultrasound and it said I might have a blood clot in the portal vein by liver. Since the operation was postponed until I am well enough to have it, I saw the allergist who said he would do the anesthesia testing, so I would have less chance of an allergic reaction. I drove all the way to Westin. He changed his mind and now doesn't want to do it. Now I am trying to figure out how to either have a contrast CT scan (bad for RAI treatment & i have sever allergy to this contrast) or MRA scan with contrast which I could have a bad reaction to and my kidney function blood tests are good enough to have it. In the mean time I have reduced my thyroid medication, for some reason I seem to have become hyperthryoid (felt like) following the FNA. Anyway, at least my pulse and blood pressure are normal range now. I can't seem to get to the operation part. I am working hard at getting there though. Part of my confusion is that followup ultrasound said that the largerst nodule in the right lobe (where .7 cm hurthle cell was on FNA) is now 1.4 mm? It seems it shrunk, could it be going away? And then there are the variances of percentages 15-65% of hurthle cell malignancy? My doctor says 15% but the new ATA guidelines say it is more like 20%? Yeah, the allergy thing has totally freaked me out. And then there is the size of the tumor also, mine is small....I have read all kinds of things about the size, but that seems to be of less importance now. My neighbor told me today I am not sick enough to have cancer, I would be more ill. Crazy huh? After someone has gone through enough serious allergic reactions like me, they tend not to trust the medical profession, which has a bad habit of undermining the danger and after-effects/trauma of having survived these experiences. But I am still working towards the rescheduling, just as soon as I am well, and hoping to have a little more info/reassurance in the allergy department. I have my cardiologist appointment and then neurologist app't Wednesday so I hope they can encourage me also. My herniated disc problem is very bad right where the thyroid is. I hope the surgery doesn't mess that up...I need that surgery too! Would be great to know I can safely have anesthesia for that also.If I didn't have this crazy allergy history (think of putting your hand on the fire over and over again and then going back for more) I would have been past the surgery already. I have had some nasty comments from health care professionals recently; it makes me want to just forget about all this. Hey at least I am still alive, who knows what will happen to me in surgery... I am that allergic to medications. Faulty thinking? Maybe. Sorry to be rambling & grumbling along here, I am totally exhausted & frustrated. There seems to be an advantage to knowing in advance, what was going on. Thanks for the message, it helped. I hope you are doing very well?

I am printing out your message and then I am going to past it on my refrigerator at eye level. Thanks again.

Hurthle cell adenoma vs. carcinoma cannot be determined until it is removed and totally dissected and tested. I had a HC Neoplasm that ended up as a carcinoma. Many more of them are adenomas. Take care of your other problems but ask when you can have the surgery to have it removed. There is a theory that adenomas become carcinoma over time, but this has never been proven. As far as the size it could be a measurement problem, and the angle that they were measuring from. In my case the ultrasound showed a 2.5 cm lesion, when I had the biopsy it showed a 2.1 cm lesion, and when it was removed it was a 1.5 cm lesion. Many of these lesions are cystic in nature so they can be hard to measure. Good luck to you and let us know what happens!

I really appreciated your taking the time to write some things out for me, along with Elaine's message, it has really helped. I read the same thing about adenomas possibly turning into malignancies but no proof of that. Along my journey with this I have experienced a few truly awful behaviors by a few medical providers. Luckily I have a lot of other great medical providers that have provided me with excellent care and treatment, so I am shaking off the discouragement. I am having an MRA to rule out the clot next week, and will have to wait for the result before the surgery. I am still looking into skin testing for anesthesia if I can arrange that. If not, I will schedule my surgery without it. When I had my FNA they used alcohol instead of the regular bedidine (sp?), or something else as a transducing liquid. Some of the ethanol entered the needle and was injected into my nodules with each pass along with the lidocaine injections. It was very painful afterwards for at least a month. I wonder if this provided some sort of ablation of the biopsied nodules? To go from .7cm to 1.4mm seems to be a big reduction. I also read that nodules frequently go through a necrosis after FNA, but of course ultrasound dimensions cannot truly be compared. All my thoughts on everything are just to ease my mind that I haven't had the surgery yet. All my doctors have said I need the whole thing out, especially since I have Hasimotos. I think I had a recent hyperthyroid experience which was causing some problems for me. I reduced my thyroid medication a little and now blood pressure, pulse, chest pain are less/lower. Since I saw my cardiologist & neurologist yesterday, I have reassurance that once the MRA is done, and results are clear, I am okay for surgery. My neurologist told me what to tell the surgeon and anesthesiologist about my C5-6 severely herniated disc/touching the spinal cord - to be extra gentle, no sudden movements, not to hyperextend the neck too much, & extra care with intubation. Even if this hurthle cell tumor is not malignant now, I am tired of the occasional hyper episodes and feeling "thyroid yucky" most of the time. I have over 8 nodules throughout the thyroid, since 1993, which have not been really followed closely until now, with the appearance of the new visual "isthmus" lump. It makes complete sense to have the surgery, and I am dealing with the fear of an allergic reaction as best as I know how. Anyway, I am on my way forwards, it is just taking me some extra time, unfortunately.
Thank you for caring enough to write me. It has help so much just to know I am not completely alone in this! This seems to be the only place that discusses Hurthle cell in detail. I hope you are doing well? Where are you now in your experience with this?

I am still on the LID and 8 days without Thyroid medication! I am feeling pretty good still, and trying to carry on my normal lifetime activities. I have been amazed at the support of my friends and family and the offers that are pouring in to help and bring meals for my family while I am in isolation. One came from a good friend that I haven't seen in years, but send Christmas cards to every year! Some days are good for the famuly, and some days are awful but we are taking them one day at a time!

Yesterday I had an appointment with my PCP who started this whole merry go round ride. All because he noticed that I didn't look "quite symetrical" and slightly swollen on the left side and got that ultrasound. I thanked him for being such a good doctor and saving /extending my life! He later reviewed my chart and called me back to make sure that I had follow-up appointments with the endo as well as a script for the synthroid, bloodwork, etc. RI starts in 11 days! Making my list of things I still need to get and do before the time. It sounds as though you have a plan for finding out what you are dealing with and I'm sending success prayers your way as I type this!! Have a great day today!
Sue

Thank for telling me about what is going on with you right now. I am amazed that you are feeling so well without any thyroid medication, that's great! I guess you are not doing the thyrogen shots I read about? Yes, you are so lucky to have a very good PCP! I have a very good internist who saw me right away when I discoverd my new lump and that began this long journey for me. I finally received the first cancer centers surgeons notes, he finally signed them. It would have been helpful to have had them sooner, it is wrong that he wouldn't sign them until I wrote a letter and sent it certified mail complaining I needed them for my decision making (I made over 4 offical written requests).It looks like you are over on the other thyca website also? Is that correct? I reduced my thyroid med as I was feeling hyper and having chest pain and irregular heartbeats. Now I realize it could have been the hasimotos acting up, not a cause of the medicine. You are so lucky to have friends and family to help out. I am severely lacking in that department, it has to do with being chronically ill and having moved away from my majority of friends four years ago, also I have been very anti-social this past year, just feeling so very tired and exhausted. My plan is sketchy but I did call the surgeon's office yesterday a to tell them I what I have planned, the MRA - they said just to call when I am ready. Getting ready/preparation is a lot of work isn't it? Where will you be in isolation? How long? I really hope this goes well for you! I am sending prayers for you also! Thank you so very much for your support, it means a lot! Lois

Yep I am at the other site as well. I will be isolated in my bathroom that has an attached bathroom to it. I will be isolated 9 out of 10 days....2 for the test shot and 7 for the full shot. If they add any more time I will scream. I'm making a list of everything that I need to do including us moving hubby's clothes to my son's room...he is in college, bringing things that I will need to the bedroom, making lists of stuff I have to get. I just got an e-mail from a friend of a friend who I have never met who has offered to cook me a meal......cards coming in from all over the place....the support is AMAZING for me to see! Just a suggestion....call some friends, send them an e-mail, etc. You may be amazed at how many people will offer to help you out! Sorry that you have to jump through hoops to get records and notes. I am experiencing the same thing....I ask for things as I am at the doctor's office, so that I have them. When I went to my endo report they still had not received the path report...so I let them copy mine! So glad that I have people here to provide support!! It really does help! We are all in this together!

Will you go crazy hibernating in there? Wow, that is a long time to be holed up in the bedroom! Is that a normal time of isolation? I hope you have interesting things to do while isolated. What will you do? Can you have a computer, a tv of course, & movies? Books? How will you get your food? Will it be left at the door or will you have your own mini fridge and hot plate? I have memory problems and with the usual constant interuptions at doctors offices (not the god ones), I forget to ask for the copies. I actually go to the hospital records department and get my own records, like you I have them but the doctor sometimes does not! I'm so glad you have so much support. I have found that my neighbors seem to be my best support. People who I thought would care, have acted like they don't know me now! Well, maybe after I have a definite diagnosis some people might care. I feel like I am in limbo. Can't move forward until I know I am okay for the surgery. I am feeling a lot better than last week! I have had this problem for such a long time - since 1993. They didn't seem that concerned back then about nodules and cancer. I am on a really high dose of thyroid medication, so it has kept everything suppressed. I do not feel well, and have not felt well as far back as I can remember. There is a possiblity I will feel better without the thyroid & hasimotos thing going on? If I had not gotten sick last week, I would be past the surgery and probably have the final pathology results now. It has been really hard waiting! I am glad there are support websites, otherwise I don't know how I could possibly deal with any of this. The information here is very helpful!Thanks for for your current update! The RAI routine is actually very interesting and unusual, despite the fact it has to do with cancer and is a real inconvience. I never knew people had to go through something so crazy like this before! Well, I am praying that everything goes very well for you and you actually have a mini vacation of sorts in your bedroom! Lois

My daughter is lobbying for a mini frig that can go in her room after I am finished with it, but I don't think that is going to happen. I have a TV, portable DVD player, computer (desktop which I turned into wireless.....in case anyone else has a desktop that they need to make wireless I can tell them how), I'm getting books from the library, watching DVD's that I bought and never watched.....you know with work and 2 teens there is never enough time. I also have phones all over the house that have an intercom so if I need anything I just page someone to bring it to me if there is anyone at home....

As for the food.....I can go downstairs when nobody is home, so I'll cook my own breakfast and lunch....cook dinner at lunch and put it in the frig.....at dinner time they will warm it up for me, and leave it at the doorway......the big joke in our house is how they will have to run down the stairs and I will have to run to the door to beat the dog will DEFINITELY want my dinner!!

So far not bad with they hypo symptoms. No meds for 11 days now, and on LID for 11 days!! Getting a bit tired by night but still able to do my work. Have had a hormonal migraine.....mild one though for the past 3 days off and on......

Hopefully you will be out of your limboo soon and have a diagnosis and you can move foreward. Will keep you in my prayers that this happens soon. Make sure to let people know what you need and don't be afraid to ask! Next event....bloodwork on the 21'st to see what my levels are!

So you really have worked things out! What about the walls, will the radioactivity pass through the walls and affect anyone else? Funny about the dog wanting your dinner! So if you move around the house is safe, i mean there is no radiation lingering after you have left? If I need this treatment it should be very easy for me as I live alone in my house, except for my chihuahua, guess she would have to visit the neighbors!How long wil tis go on for exactly? Well hope the diet has worked our and your levels are where they should be. Did you consider the thyrogen?

Well am still having chest pain, but no irregular heart beats. I forgot to take my thyroid medicine for several evenings...I take natural thyroid, Nature-throid medication and it works better if it is divided during the day. I have been falling asleep on the couch and when I wake up it is morning. I am a little tired, I feel like I am moving in very slow motion compared to the rest of you. I have been telling myself maybe I do not have a malignancy as I have had this for so very long, then again I remind myself this is serious and I haven't felt right for the past year. Regardless, with all the nodules-over 8, hasimotos and a new visable lump with pressure swallowing, I think it is time to have the surgery. Hopefully that will be not too far away. Thanks for the message & all the info.!!!You sound very upbeat and that helps me feel better also! Lois

We are still working out the details but are getting stuff ready and a list of things that we need to do! Radiation does go through walls as well, but my bed is more than 6 feet away from the wall near where anyone would go, and I am setting up things along that wall as well.

When I walk around the house, they say that the radiation is minimal, but I will be wearing gloves to keep the radioactive sweat from getting on anything that I touch. Maybe an overkill, but the tech said that it would be fine.

I will be in isolation 2 days for the test shot, and then out for 24 hours. Not sure if there will be any restrictions at that time or not. Then I will be in isolation for 7 days after the full dose.

My doctor did not consider Thyrogen for this ablation as she feels that the Hurthle cells will be more accepting of the iodine with LID and going hypo. I really don't feel too bad being hypo at all! Just tired....now not very hungry, and putting on weight with salads and the LID. This morning woke up with a bit of horseness, headache, and nausea, which the surgeon says means that I am going hypo just fine. I am still tired and when on my feet too long my back starts to ache. Hands aren't moving as well today to type. I asked my surgeon about my needing new glasses and he said that could be because of the hypo or my age....and not to get checked for at lest 6 weeks after my treatment.

Don't spend time worrying about if you have a malignancy or not....that will be determined in the future. Put your energy towards correcting your health problems that you have right now! Some days are more positive than others....today is less positive, but I'm sure that something will happen to make the day a better one.....God does always provide that! Blessings, hugs, and continuing health for you! Make sure to put those meds where you remember to take them!!

I can tell you are hypo by your recent posts. I get hypo very fast when I forget my medication. In about 5 days of forgetting to take my medicine I can't get out of bed and I am depressed and everything else you have talked about. I saw your other post here about the endo. not being very optimistic. Let me tell you from over 20 years of being chronically ill with other health problems, doctors do not know everything! So, I want you to take on your own advice and not spend time worrying, you have good and bad days like me, but God is especially looking out for you and your family, I just know it! Otherwise, how could you have been so upbeat about everything you have been going through lately? There are people here with so much positivity and so many problems, who have been through so much. I keep asking myself, how do they do it? And always remember, you are that strong too & you can always seek out a different & more optimistic opinions at any time you choose, even if you just need it for some reassurance. I think you are doing great with all of this! And your writing here has really helped me want to get my surgery done and overwith! Thank you for your lovely posts & strength! Smiles, Lois

I think that it was all the stress.....dog getting sick, daughter spraining her ankle, hubby stressed at work. I wasn't sleeping all that well. One night with a sleeping pill.....and the next day I felt back to my old optomistic self. I'm still feeling good and think that I have finished the preperations for the radioactive iodine tomorrow. I'm upbeat and positive once again, and my hubby and I have spent the day finishing the preperations, talking, and just enjoying each other's company! We've even talked so much about things we want to change about our relationship after the treatment is over to make things even better.....we've been married for 24 years as of May 3rd. I'll be in isolation during my aniversary, but will celebrate afterwards! Thank you for your posts and your encouragement. I had to remember that everyone has bad days and good days, and that 1 bad day does not mean that tomorrow won't be better and brighter! Wish me luck tomorrow!

Actually, your sharing your experience has given me the most insight into all of this. It is interesting that you and your husband having been talking so much, that is great! I am also glad you are feeling better. When I am hypo I can't sleep at all hardly and feel horrible as a result of that. I'll bet you can't wait to be back on thyroid medication! Will you be posting all the way through your RAI & while isolated? I am very interested in how you you do through all of this. Thank you for writing me & sharing. I do not feel I fit in at the other group as I haven't my TT yet, and I don't have a diagnosis,as so many already have with papillary. I have tried posting there but only received a few answers. Interestingly enough, some with advanced hurthle cell cancer were kind enough to write me over there. About preparing for the RAI, did you not use Thyrogen hoping for the hurthle cell to better uptake the raidation? I really hope this works well for you and the hurthle cells are receptive! Well, I hope all goes very well tomorrow and you become less afraid of everything after that. Take care & God bless! Lois

My hubby knows how much he needs me now, so I think that this is the positive thing that has come out of this.....and so much more!! I can't wait to get this over and try to take control of my life...and get back to normal living! I will be posting throughout my isolation....computer in bedroom. I did not use Thyrogen to have a better uptake of the radiation. My endo felt that a longer time on LID and without thyroid meds would increase my chance for uptake for the first treatment! Right now I feel so so upbeat and so blessed! I have already received calls from friends, messages, e-mails...It is just amazing!

Finally the day is here! I swear the waiting is the worst part of all of this! So glad you shared your endo's feelings with me as to the LID and no thyrogen. I will be keeping that in mind should I need to go this route also. I am so happy there has been a very positive outcome in all this, with the renewed appreciation of each other in your marriage! That is great & exciting! Well, I look forward to your next post and I hope you have very few side effects today! Smiles & keep the faith! Lois

Got out of my isolation after my first body scan for 24 hours! Dh , dd, puppy and I got to spend the evening together just hugging! It was so much fun! dd was at Girl Scouts and we were on the couch when she left, and were up in our bedroom with the dog.....when she came home she yelled and wondered where we were . We told her we were in the bedroom.....and told her to come up. Being 14 she just said gross....I'm not going up there. Told her to come up and she found hubby, dog and I in the bed snuggling together fully clothed! LOL!!! She joined the fun and we were all 4 together!

Today is the real dose.....also wanted to let you know that for each horror hurthle cell story there is a success story. I have a One on One who has been symptom free for 8 years now!! Gotta get to work...Have some laundry before isolation starts again!

Dear Danjo,
I am truly sorry to hear this story, however, I would guarantee if you post his original pathology afer surgery he already had lymph involvement. While it is true that this type cancer does not uptake RAI131 very well, it is the only option. For me, it was to make certain that all thyroid cells were ablated.
So far, I have had a positive outcome and have blood tested every three months, full neck
ultrasound every 6 months. All treatment is done at Johns Hopkins, not where I live in south Florida.
I was diagnosed in early 2009 so about 18 months ago.
Please let me know his original TNM if you have it.
God bless and I shall keep you in my thoughts.
Also, I bought two medical textbooks and found studies done by two of my three doctors. I did a lot of research. This year I had Thyrogen and he did not order any scans except ultrasound. This is all due to TNM at initial diagnosis.
Elaine

P.S. Lois and Weberdens
I was not isolated except at night. I could spend short times around everyone except small children without direct contact. I was a guest at my sister's home since I don't live in Baltimore. For one week my husband and I could not share the same bed. I also avoided food preparation for the 2 weeks(nails looked beautiful) :)
Don't let this be more than it needs to be.
You should forever be concerned about further dental x-rays and the like. Ask for a pat down at airports, not the new scanners, which emit radiation. This is a radiosentive cancer.
Good to be back in touch after a short getaway!!

Elaine

I have my new surgery date of June 11th. I am anxious to get this behind me. Do you know know the current protocol concerning lymph nodes during TT for hurthle cell neoplasm? I Hope you are well. Smiles, Lois

sorry for everything you and your partner have been going through? How old was your partner when diagnosed?

Will keep this in mind if I need it!

I haven't written for awhile. Was diagnosed on February 23rd and they had to wait 2 months before taking the right side out which was 3 weeks ago. The right side came back non-cancerous, just the left side. I am on Cytomel now until May 24th when I go off and will also go on the low-iodine diet. I am nervous about that. I had to have my thyroid med adjusted as I wasn't feeling right and they TSH came back at 12.5, instead of 0.018 where it was before the 2nd surgery. I know we are all going through some rough times. I have an intermittent leave through work so when I don't feel right I can call in. I worked one night last week where my brain felt really muddy, which isn't good for an ICU nurse. I have my ablation on June 9th along with the scan. I can't wait to see if it is anywhere else. I am hoping that since it wasn't in the right side that it hadn't gotten anywhere else. The left side was large and I also did have Hashimoto's thyroiditis which was found at the same time.

9 days is alot for isolation. I was told only a week and to make sure you flush 3x after using the toilet.

Lois, I hope things start getting better for you.

Karleen

I got my new surgery date today of June 11. I can't believe this has been going on this long. I am feeling better now since the illness that posponed my April TT surgery. Nice to see you here again and thanks for asking about me! Wow, 2 surgeries! I hope you okay through the LID and RAI. I have hasimotos also. Lois

Will keep you in my prayers. I'm back to work....less than 1 week after RAI, so I haven't been able to post as much! Spending time with the family when not working but thinking of you all!

My endo told me that the radio-iodine treatment didn't work but it was all we had. Have to try anyway. I will be having the pet scan in June and can't wait. What type of blood test do they do to show the Hurthle cell? Just interested if they should also be checking this. I haven't heard of blood tests for this before.

Karleen

Karleen
I have a Questiion: I had my thyroid taken out on April 20...Dr. thought I had thyroid lymphoma...what they found is no thyroid tissue left only Hurthle Cells fast growing...My Endo told me that I was lucky to have gotten the surg when I did because the cells were begining to change and become cancer...I asked if there could be any cells left that could attach them selfs else where in my body...He said that if the surg. took the whole thyroid out together then there is very little chance...I know the surg did two frozen biop. (rt & Lt) I know that the thyroid had already attached it self to my vocal cords and that it had to be cut away.(it has been almost 3 weeks sence my surg and still have hardly any voice...Surg said my vocal cords were badly brused and it could take up to 2 or 3 months before my voice will come back) then I also know from the path report that the Thyroid was taken out in 2 sections...There was no parathyroid tissue taken out....What are my odds of this turning into cancer...not knowing if there were cells left behind or part of the thyroid left behind...What should I watch out for??? Dx was severe Hashimoto's thyroiditis
RT was 4.7 x3.5x1.3
Lt was 4 x 2.5 x 1.5
any information would be great
thanks
Yetta

The blood test in question would be your thyroglobulin. This is the carcinoma marker they use in HCC.
Good luck and welcome to all the new peolpe who have joined!!
Elaine

Hi,

I just wanted to introduce myself. I was dx'ed in Sept. of '09 with HCC after removing 1/2 my thyroid - I'd had nodules for years since my 20's and I'm now 50. (I've also had four negative biopsies in the past ten years). The removal was because it seemed to be growing, and my endo wanted it out. Unfortunately, they found a 6cm hcc - though it doesn't seem to have spread. They apparently had difficulty diagnosing it, so by the time they found out, I was too far out of the intial surgery to go back in and have the TT.

I transferred to Mayo, because I live in MN and I could - seemed like a good idea. Surprisingly Mayo docs didn't seem too urgent about me. Their take is mine seems to be slow growing. Seriously, I have no idea how they come to that conclusion and think it's bunk, but anyway...

I suppose I worry about what everyone does. Just because there isn't evidence of spread, the realtiy is we are dealing with microscopic cells. It's spread, or it hasn't - I'm glad there's no evidence, but I guess only time really will tell. And, it is weird to get different takes on this cancer from my docs. My regular endo was aggressive and uber serious about treatment regimines. She concurred I should go to Mayo - and they were kind of calm about the whole thing - really believing surgery was curative for me. However - they seemed a little more alarmed about the tiny papillary spot, whereas my regular endo basically said pretty much everyone has these tiny spots ....

Anyway, I'm of the mind better safe than sorry - so my approach is to be vigilent, self advocating, and pretty aggressive.

And, I realize that medical professionals aren't gods. I literally watched as they did the FNA's, knowing they got the tissue ... and still after four times, they did not find the HC. Scary really.

I had the rest of my thyroid removed in January. They found a tiny spot of papillary cancer in the other lobe - again they weren't concerned at all. My ct scans of head and lungs were clear - ultrasound too.

I had the radioactive iodine in March after the low iodine diet, and much like others have written here - it was fine. Isolation, changing food, etc., but in the big scheme of things no big deal.

I just had labs done a couple of weeks ago. I'm a little confused about the numbers they look at - my Thyroglobulin is 0.1, which seems to be good. My TSH is 1.14 - and my levothyroxine was upped to 150 as I think they want that number at 1 or below .... but I really am not sure.

I have an ultrasound in August. To be honest, I'm scared. At the time of the initial dx - my friends banned me from the internet (and I complied after one horrible night). At that time too much was going on - I was going thru a divorce, bankrupcty, foreclosure, etc. The cancer treatment path was set - reading and worrying was just making things worse.

But, now things are different. They are better, and it's time for me to look again and seek and offer support to those in similar places. One of the things the Mayo docs told me was that people react to the name Hurthle Cell - but they see a big number of these cases. They said, fwiw, that each case is really different - and we have to see it that way.

I'm hopeful for me, and for all of you. We're breathing today, and that is good. Keep fighting and take care of yourselves.

molly

Hi Molly,
This all sounds very positive. I am most impressed with the vigorous way you are acting as your own advocate!
You should have your TSH suppressed after R131 for about 1 year. It shoudl remain at 0.0??? because the year marker is usually Thyrogen shots, not R131, if all stays clear. I was on 175 mcg for a year. The last three motnhs before the Thyrogen were a stretch as
I was so hyperthyroid. I kept thinking I am going to have a thyroid storm. My friend died as a result of a thyroid storm.

The thyroglobulin is super, as that indicates no presence of carcinoma in your blood.
I have found that the doctors are less alarmists than we...it is our disease, not theirs.
I would also hope you are going to get full neck ultrasounds at least every 6 months. This really helps you stay on top of things. I also go bet my blood work done every 3 months, with or without a doctors requisition.
All the best,
Elaine

I posted details of my HCC journey earlier. After I131 last Oct. I had a whole body scan and had uptake in two places--uptake is less likely with HCC but indicated matastisis in a lymph node under my right breast bone and some in my b\thyroid bed which was most likely residual thyroid tissue. I will have another whole body scan in June and a PET scan a week later that along with the 6 monthly blood tests and sonograms are the 4 elements of regular vigilence that are the rountine for now.

As you say, strong self advocacy, vigilence, and good information and coordination between the endo, cancer surgeon, radio oncologist are all critical. My daughter who works at Johns Hopkins researched the best places for HCC and Mayo-MN and UC San Francisco are the best.

Good luck.

Hi Molly,

I also live in MN so I was interested in what you said. My endo used to work at Mayo and now works here in the cities. She said at Mayo she did research on Hurthle cell thyroid cancer and stated there are not that many cases out there. I suppose she meant for research purposes, but she stated it is usually a slow growing cancer but very aggressive so we are going to be just as aggressive. Like everyone and everything, everyone's body reacts different to everything, including this cancer.

I agree that we need to fight and take care of ourselves.

Karleen

Yetta,

So the pathology came back that it wasn't cancerous? I know there are Hurthle cells in our body normally and they can change, as mine did, to cancer. My Thyroid wasn't not as big, the right was 3.5 x 3.3 x 3.1, not sure on the left. Are they still planning on doing the radio-iodine treatment or because there was no tissue left? I know Hurthle cells do not normally pick up the radioactive iodine but it is still worth doing just in case. I have mine coming up on June 9th, go on the low iodine diet May 24th and stop the thyroid meds at the same time. I would still want a follow up with a petscan and CT's or MRI to make sure there aren't any cancer cells out there. Even the blood test checking for cancer in the body such as CA 125, CBC, thyroglobin, and urine cytology. I just would not want to take a chance on it being missed and having a chance to grow elsewhere. I think a lot of woman have Hashimoto's thyroiditis without knowing it. I certainly didn't know until they found that my thyroid was enlarged and removed. I heard it is because of the low use of iodine in the diet. I know I don't use alot of added salt to my diet but also always heard there is enough in our normal diets.

As far as symptoms to watch for, there are many and they all can go with different diagnoses. Such as fatigue - more then normal, weakness, weight loss, aches, pains, blood in stool or urine. Basically anything that is different then normal, I would go in and have it checked.

Karleen

I have an appt. with the Endo. on June 3td for blood test and just a check up I guess??? Then back to the Surgen on the 9th. for a recheck....How long did it take for all the swelling to go away after you had your thyroid taken out? I am still pretty swollen and still very little voice...I will request the thyroglobin blood test, I know that the CBC, Metabolic, T4 and TSH levels have been ordered...I am begining to become Hypo. My hair is falling out and I am very tired. I was hyper. before...I just want to feel good and have my voice back....I am very worried about the what if's...In Oct. my thyroid was normal by Feb it had changed that much...So the swelling or lump that I have worries me....I don't know...It is shaped like the letter L and is on my right side of the neck...I had my thyroid taken out on April 20th, three weeks ago. I don't know if it because I am worried that I am making to much of this or if it is something that needs to be looked at...I don't know what is normal....Thank you for your input and best of luck to you
Yetta

Sorry Yetta I just have been busy and not checking this site. The swelling took about a month before I could eat again. It was worse because they had to cut through my neck muscle. My TSH is still high but coming down and I am still loosing lots of hair. It also went curly from the radio-active iodine. Alot has happened, my mom died that day after I got out of isolation from the radio-active iodine. She had non-Hodgkins lymphoma which had gone to the brain but otherwise was cleared from the body. I have been feeling tired and weak. My muscles are really weak after not doing a whole lot when I had been so hypo. I started getting some energy in mid-August. I am waiting on a pet scan on September 13th and now the ex is taking me to court to decrease his child support. Things have to get better soon! My mom's brother also was diagnosed with pancreatic cancer about the same time mom and I were both diagnosed with our cancers in December.

Hope things are better for you.

Karleen

Hey, how are things going for you guys now? My mom is kind of in the same boat and I know we are running out of options. I would be grateful for any help.

Kelley

Dear Alice,
That is the very nature of recurrent Thyroid cancer. Unfortunately, sometimes it does return.
It would be interesting to know at what stage (TNM) your original diagnosis was. Do you have that information? Also, was it in your lymph nodes when you originally presented in 2006? All this information helps predict prognosis. It isn't the final say, though.
Stay positive.
Have blood and ultrasounds monitored more frequently too.
Best of luck!
Elaine

Elaine, you will pleased to know my re-scheduled surgery is coming up and will take place on Friday June 11. I have pre-op again tomorrow. I am so very worn out from waiting for this. I still wonder what will be found. I have had two cancer scares before and both times I did not have cancer but was told it could have turned into cancer, at least with the breast situation in 2003. I guess I at least have a hurthle tumor of some sort with the FNA result I had. I started having a little trouble swallowing again and I feel some pressure there, so it is good it is happening soon. How have you been?

Alice: So sorry you are having this hurthle cell returning! I am wishing you well with your situation & saying a prayer for you!
Smiles,
Lois

Thinking of you as you get closer to your surgery date! Haven't been doing much here as I have been trying to live a "Normal" life after the RAI and a scan showing only neck thyroid tissue.

Since I had the most recent surgery to remove the nodule on my neck (which was HCC) I have been made very aware of how little many in the medical profession know about HCC. My surgeon referred me to a medical oncologist, who while very nice had to research HCC while I was there. I had a friend who is an RN accompany me on that visit. She asked some very pointed questions and we found that the pathology report did not address the margins. The doctor had to request that the pathologist restudy the slide. I am waiting to hear those results. At least this Dr. was honest and admitted he had never seen HCC. He did order a PET/CT scan and a bone scan. While a medical oncologist was not the right specialist for me, some progress is being made. He referred me to a radiology oncologist, whom I haven''t seen yet.

My appointment with my endo was a week later. He has ordered the thyrogen injections and RAI. I had to postpone the bone scan since it would interfer with the RAI treatment. I am now on the LID and having the PET scan today.

This is my first RAI since my original surgeon (in 2006) was so positive that he removed the entire thyroid that none was performed after that surgery. I was only followed by my PCP for the first 2 years post surgery. I have never received any copies of the pathology reports from any of my surgeries and was never told what stage my cancer was. All I heard was "we got it all and you should be fine". I now realize that I needed to be more proactive and get that information. I went from shock - you have cancer! to relief - it's all gone! I did a bit of research, but mostly put it out of my mind. Now I know I was very wrong. We have to be our own health advocates and we have a right to know the details. I hope I am on the right track now. My endo seems to know what he is doing.

I'd appreciate any advice on my up coming treatments.

I was diagnosed with HCC in March. I had RAI late April into May. Full body scan showed only activity in the neck, so we are now working to get my Synthroid levels right and will wait for 1 year for another body scan! Hugs and hope that your treatment works and is successful. You also don't mention if your tumor was encapsulated or vascular. This will have an effect on your treatment prognosis as well as your age. Hopefully all will go well and you will continue to live a long and healthy life! My only concern is if this is recurrence of HCC as treatment prognosis isn't as good the second time around. I would suggest going back to your 2006 surgeon or your PCP to see if they have a pathology report. It is also available at the hospital where you had your surgery.

Can't tell you what to expect as I have not gone through this with Hurthle cell cancer, as I have not had any recurrence. Hugs and prayers as you go through this!!

I am scheduled for a TT with possible neck dissection this Friday! I can't believe I am finally having my surgery. I really hope my surgeon gives me the TT as planned. I was a little worried at the pre-op as he seemed to be describing a partial. I interrupted saying I thought I was getting a total. I am only doing this once, I am too ill and I have over 8 nodules and they are on both sides and I am on full replacement thyroid medication now. Then I showed him a recent medical journal abstract stating TT should be performed in all patients with a multinodular goiter and hurthle cell neoplasm FNA. What I difficult patient I am! He said something about my not having to worry about having future ultrasounds of my nodules or FNA's. The nurse said I am getting TT and I was always getting a TT, but for some reason I am worried I'm not? The description was to start with the area of concern and do a frozen section, if not papillary cancer - no neck dissection and then move on to the isthmus nodules and remove that... I stopped him there with “my speech”. The form says TT with possible neck dissection.....do all thyroidectomy forms say the same this, or do some just say thyroidectomy or partial thyroidectomy?

Lois

Hi Lois. Hope the surgery goes well for you this Friday. Good Luck!

As for the surgery forms, it should say TT. For my first surgery, it said 'left side thyroid lobectomy', for the second, it said 'right side completion thyroidectomy'. And before each surgery, the nurses, anesthesiologists all asked me what I was going to have done and I had to sign a paper saying that I understood what the procedure was and that I was giving my consent for the procedure; before I was taken back to the operating room, my surgeon came in, confirmed what he was going to do, tried to put me at ease, then asked if I had any questions.

You, well all of us, need to be vigilant that we are getting the proper care and procedures. You should have complete confidence in your surgeon, so not sure what to tell you, but I think if you feel like you need to ask more questions, I think you should. If you trust the surgeon's nurse, I would call her with your questions.

Before my first surgery, my friends and family kept on telling me that if I wasn't sure about my surgeon (since I did have a 2nd opinion surgeon, from a different medical group), I could always cancel the surgery, but to me that meant having to wait for a new surgery date. In the end, I was glad I stuck with my first surgeon since I did need two surgeries - 1st surgeon would make a necklace incision at the bottom of my neck; 2nd surgeon was going to make the incision on left side of my neck the size of my left lobe to take it out.

Hope that helps. I will be thinking about you on Friday.

Thanks for your message and explaining what happened to you in the beginning of surgery. I have had 2 pre-opts as first surgery was cancelled. I do not know what is wrong with me. I had a bad case of nerves again this past week. Yes, my form says TT w. possible neck dissection. My doctor never told me he was only doing one lobe or partial. I checked on the web for surgery procedures in doing a TT, and it is medically described the way my doctor was telling me. I also checked about the lymph nodes & Hurthle and what he told me was correct, as endocrineweb states it spreads in around 10% of cases. He is a top thyroid surgeon, I can't believe myself sometimes...Okay, that aside I checked out relaxation CD's from my cancer center and started listening to them...really helped. I am feeling the pressure back in my throat again and my throat feels sore...I read this can be part of the thyroid problem. I have been having severe leg cramps, down the fronts of my lower legs, at night, that keep me from sleeping. Could this be thyroid related? A few more things to do to get ready...most important one...getting notes ready for anesthesiologist, also a brief note for my surgeon. I am not going to think ahead of myself...just take one step at a time going forward. My pre-op covered everything in detail, but I am bringing backup notes just in case. I really like my surgeon, he is so nice! Tomorrow around this time my surgery will be over ....yay!

Thanks again for your help! Lois

Hi Lois.

I think sometimes our doctors forget how non-technical we are with medicine. Sure they've been doing the procedure every day for the last 30 years, so it's a piece of cake for them, but I think they often forget that we don't have our thyroids taken out every day, so although it's medically necessary, and they are telling you what you need to know so you can survive your disease, it is not communicated to us in a way that puts us at ease.

I am glad you are feeling better about the surgery. I honestly think I would've backed out if I had to wait long enough to have my surgeries. My dad ended up needing a triple bypass 4 days before my first surgery, so I didn't have time to think about my own surgery during those days, all I could think of was 'is my dad going to make it out of this Ok?' The night before my surgery when I was visiting him at the hospital he told me how worried he was about my surgery the next morning, and there it was, my surgery fears came back, but at that point I wasn't going to turn back and call it off. I was still very nervous the next morning, but I knew it had to be done so I could find out if it was cancer or not.

Stay strong. Try your best to relax today. Sleep well tonight and be happy that it'll all be over in by this time tomorrow. We can share and laugh about our recovery nightmares when you are feeling up to it.

Good Luck!!!

I think that I was so tired an so scared I didn't understand my surgeon. Fear took hold again! My hyper frightened state and extreme fear of surgery was due to past negative medical experiences. I am embarassed at how nutty I became during the last week!Immediately following surgery I felt so relieved and peaceful. All I had to worry about was resting and recovering, the easy part psychologically. It seems you had a really stressfull pre-surgery yourself but due to family circumstances, not your own mind! How did your dad make out with surgery? I stayed really busy the last few days as I had so much to do to get ready, and not enough time. I think God heard my plea and stepped in and provided the best medical angels to care for me just prior to surgery. I went in as the first group of patients early in the morning, 5:00 AM! I could see they all felt as nervous as me. We sat in a waiting room and a woman told us what to expect, when family members would get to see us just before surgery, afterwards and other details. It was nice to see the other patients holding themselves together. We looked at each other with an "I understand" smiles and walked together and went up as a group to the surgical floor, then into our separate pre-op rooms. I do not remember much after the surgery but I do remember the kindness of the pre-op staff who helped me. Going to surgery as a group seemed reassuring.
Thanks for caring! Lois

Thinking of you today and wondering how you are doing???

Dear Lois,
Hope all is well following your surgery and that you will continue to do well in the weedks and months to come.
Please know that our prayers and thoughts are with you.
Elaine

I have been hanging around here a long time waiting very nervously for my surgery. I had a TT last Friday morning at MD Anderson/Orlando in Orlando, FL. I had a very good experience there and excellent surgeon and anesthesiologist. I cannot say enough good things about the expert care I received while there. For anyone who is looking for thyroid cancer treatment and or thyroid surgery in Florida, or other cancer care, I believe this is an excellent choice. Thank you for all the support I found here and caring friends. The surgeon did not find any papillary cancer on frozen section in one area of concern. The final pathology will determine whether there is any malignancy or not on hurthle cell neoplasm. My surgery, despite lots of other chronic medical problems, was not that bad and the worst of my pain now is from my herniated discs in my neck. My scar looks good, has steristrips along the incision. The drain is out. I have my voice. I did have slightly lower calcium levels in hospital & went home with calcium and pain med. RX. Post op is Thursday. I am still feeling dizzy/headachey but that could be coming from my spine or because I also accidently hit my head while in the hospital. I had high blood pressure while in hospital, but it seems lower/normal range today.
Thank you for caring and all of the great support! I am elated this surgery is behind me!
Smiles, Lois
TT June 11, 2010
multinodular goiter
Hasimotos, FNA Hurthle cell neoplasm
On full thyroid replacement prior to surgery

Right before surgery I felt all of the good thoughts and prayers from so many people. What seemed impossible became simple. I had excellent care and all of my concerns were listened to and taken into consideration. Everything I hope for in a safe and uneventful surgery happened. I was the most neurotic pre-surgery patient imaginable, due to many past negative medical experiences from years ago and extreme (unecessary) fear. Now I have a great positive surgical/medical experience to remember! I also have a medical plan for future surgeries, I am so very happy this worked out so very well!

I am doing fairly well. So happy this is behind me! Hope you are well? Smiles, Lois

Lois,
So happy to hear your surgery is over and that you are doing well.
Alice

I received my final pathology results yesterday. The surgeon had not read them but gave them to me during post-op. Basically they found a 0.7 cm hurthle cell adenoma,a 1 cm nodule of the isthmus with adenomatous hyperplagia, and nodular hyperplagia in the rt and lt lobes, with multiple nodules within the right and left lobes largest measuring up to 1 cm.

I have requested a seond opinion patholgy with MD Anderson in Texas, specifically a Dr. luna who specializes in hard to determine pathologies such as hurthle cell. My surgeon is going to try to arrange it. I want to be certain this patholgy was read correctly.

The report was rather short and I was wondering should all of these nodules have been examined and reported on more closely? I do not know about these things.

So it appears this is good news but I am not ready to celebrate yet as I have heard that others have been found to have HCC on second opinion final patholgy. I have a lot of my energy back and have been up most of the day. Yesterday I had to drive to Orlando for my post-op and cardiolosit visits, it was hard. I also saw my internist today. He is concerned about my low calcium levels and ordered another ionized CA test. The scar on my neck is really starting to bother me. They took off the steristrips yesterday and it feels like it is being pulled in. It has a lot of swelling/fluid inside. The ends of the scar are looking rounded and hard. I have dissolvable stitches, is this normal? Also, my ears are really hurting inside (ear drums) and my throat sore again(had stopped hurting) and my voice is a lot weaker? Had TT last Friday, one week ago, is this normal? My whole neck hurts a lot everywhere. I have not taken any pain medicine since Sunday evening in the hospital. Any suggestions for the scar or what I can do to ease the pain. Is is too soon for warm compresses? Lois

Hello everyone -

My mom was just diagnosed with Hurthle cell cancer and I cannot express how helpful, comforting and educational it has been for me to have found this group - It seems like months have past since I started reading the posts but in fact it has just been less than 48 hrs.

Everyone told me that a thyroiddectomy is a common and safe procedure. TONS of people have had it - mothers of friends, friends of friends --- It has been 4 days since the surgury and mom is still in hospital - battling with calcium levels that have dropped as low as 5.8. The surgeon said the operation was difficult with lots of inflamation.

AS she battles with levels, I battle with nurses who keep telling me that moms meds are on the way - pharmacy who says meds have been sent up -- different "senior resident students" every night --- makes me feel like a trouble maker...

The endo said results won't be in till next week - But he said that its hard to detect if the cells of hurtle cancer are malignant or beign - so he recomended radioiodine and then he made it almost seem like the best thing to do is to wait --- which I will not do.

AND so does anyone know of any treatment centers in nyc - I guess Cornell and Presbyterian hospitals????

THANkS everyone for sharing - it has truelly helped me a great deal to read your stories - I will keep everyone in my prayers as i kick some Hurthle cell cancer ass.

As you can see I have been having the same situation. How is your mom doing today? She is so lucky to have you for excellent support! I am a little confused, did you mean to say she had a hurthle cell neoplasm (FNA biopsy result) and the final pathology result won't be back for a week? Those of us with the hurthle cell FNA (mine was termed a neoplasm) go into the surgery not knowing what exactly will be found. It is so hard to not know what you are dealing with! Since I had so many nodules on both sides, hasimotos and a goiter I decided to do the TT, as opposed to having only one side removed. I just found out that my pathology result was a hurthle cell adenoma (benign) tumor, as opposed to a hurthle cell cancer. I am still wanting a second expert pathology opinion, as hurthle cell carcinoma is hard to identify. My pahtology slides are being sent to MD Anderson TX facility. Hopefully after I received those pathology results, I will trust I am out of the woods and not needing cancer treatment. The waiting is so hard. If your mom is found to have an adenoma or benign finding, they would not be doing RAI. All of this terminology is very hard to gasp onto. I will be thinking of you and sayiing a prayer for your mom! I hope she is doing very well today and not in much pain. Smiles,
Lois

I would definitely get a second opinion on this as RAI isn't done for benign tumors and the pathologist should be able to tell if it is malignant or benign after a disection of the thyroid after it's removal. If there are questions you can ask for a second opinion for a pathologist to read your tissue samples.

During treatment for breast cancer, I underwent a full-body PET scan and a 9 mm lesion surfaced in my left thyroid lobe. I underwent a FNB and the pathology report came back as showing Hurthle cells with prominent vasculature. The differential diagnosis was adenoma or Hurthle cell neoplasm. My ultrasound did not show anything of concern in the right node (or at least I don't think it did -- I just talked to the radiologist during the procedure and have not yet seen the report). My head and neck surgeon and my endocrinologist and just about everything I've read on the internet suggests that surgery is the only way to deal with the uncertainty of the neoplasm.

Because I am taking a hormone drug for breast cancer (which makes me more fatigued and which accentuates all the usual menopausal side effects), I preferred to go through a lobectomy first, since I was advised that I have a 75% chance of avoiding thyroid medication if I only need a lobectomy. I do not want to deal with thyroid medication on top of the hormone treatment for breast cancer, if I can avoid it.

Anyway, I am meeting again with my head and neck surgeon, who came highly recommended, and I know from my preliminary discussion with him that he is going to push me to have a total thyroidectomy. One of my doctor friends then told me that he felt that my surgeon was being too aggressive in his approach. But, he is not a specialist in this field.

I am starting to obsess a bit since my surgery is scheduled soon, and I have a few questions:

For those of you who went through the two-surgery process to remove your thyroid, was it that much of an ordeal to undergo two surgeries to remove your entire thyroid, rather than having it done all at once?

And, for those of you who have had your entire thyroid removed, how long did it take before you were able to function and get back to work, if you had to? I am admittedly scared about adjusting to the post-thyroid world.

I discovered this chat room and it seems to be one of the best resources for info about Hurthle cancer on the internet. I found it very, very helpful to read everyone's comments.

By the way, my breast cancer was at a relatively early stage and, after the usual surgery, chemo etc.., it seems much less threatening. It has also thickened my skin for this latest journey.

Thank you all for any info or input you have.

Celebrate and enjoy the good diagnosis. Warm compresses will help ease the pain of the scar. I'll e-mail you privately later as I am heading to my parents house for a picnic!

I think I am ready to celebrate? I'm still a little worried it might have been missed. Oh heck, I may as well be happy while I can! Have fun at your picninc! Thanks!

Lois that's great news!!! Even though I am a new bee, I think that you should definitely celebrate! You deserve a celebration…

My mom got home on Saturday and she is doing better. Thanks for the prayer. =)
She's had a history with thyroid disease and has been taking sintroid ever since I can remember - We are from Poland - and she was in Eastern Europe during Chernobyl. Her last biopsy (8 months ago) detected inflammation and growth of nodules on both sides and I guess hurthle cell neoplasm- as the doctor’s said that these cells are unpredictable – and can become cancerous. SO she had a total thyroidectomy. The surgeon said that he’s never seen such an inflamed thyroid before and he along with the endo are stressing Hurthle cell cancer however won’t know anything for sure until the slides come back.

So I guess we are waiting for the pathology result.
After reading about Hurthle cell I can understand why you would be hesitant in celebrating as these cells can be sneaky – but Its great news that your results came back as hurthle cell ademoma and I am hoping for similar results – so CHEERS!

I hope everyone can take the time out today to enjoy the first day of SUMMER!

Marta

It is hard having surgery not knowing in advance if a person has cancer or not. I am hesitant but grateful for now. Thank you for your happiness at my result. Have you heard anything yet and how is your mom doing? I really hope your mom has a benign result like me! I have been having calcium issues but hopefully they are resolving. My incision is healing very well. I just started using a silicone scar patch and in only two days part of the scar is invisible...hard to believe only 2 weeks after surgery. I am also drinking 2x's daily an Emergen-C pk (vitamin C + some mineral, vitamins). Also I have been eating a lot of fresh pineapple, which is suppose to be good for healing. Sure helps with relieving constipation after surgery.

I know I should be so very grateful, and I am, but I have been feeling kind of down after the long drawn out stress of waiting for a final result (6 months wait total since the new nodule showed up). I still worry a cancer was missed and I am not sure my surgeon has requested the second opinion I asked for. I do have a follow-up in a couple of weeks. I am also not sure if my thyroid replacement is the right level or it is just the low calcium symptoms. I have/had hasimotos. The final path found a lot of nodules throughout my goiter but only one hurthle adenoma. I do feel better now after surgery, but also I wonder things like will my thyroid tissue grow back or will the hasimotos come back? Could the adenoma have turned into a cancer in the future? Was it really necessary for me to have had this operation? I felt so very bad prior to it. I really thought something was wrong with me, that I had cancer. Guess I am just going through post surgery blues, kind of like a post-partum or grievng of my lost organ!

Thank you again for writing me and I sure hope your mom is doing very well. You are a very sweet daughter to be posting here for her! Please keep us up-dated as to your mom's healing process and final pathology! I'm sorry for my "going on" here about myself, the focus should be on your mom's situation right now! Smiles, Lois

First of thanks to everyone for sharing their experiences. It really helps to know others are in this battle and are winning.

I got the results of my PET/CT scan and there is another tumor in my neck. It is 4.3 cm X 4.2 cm and goes below my collar bone. I see a head & neck surgeon on July 1st to schedule a neck disection. This will be my 4th neck surgery. My oncologist got a more precise pathology on the recent (May 8th) excision and the margins were positive (dirty) so it is most likely that this new mass is HCC also. The RAI treatment has been postponed and I will most likely have radiation treatments as well. The good news is that there was no other indication of cancer at any other sites on the PET/CT scan. Has anyone had a neck disection for recurrant HCC? I am wondering what to expect. I know the surgeon will explain things, but I'd like to hear personal experiences. I'm doing my best to stay positive, but must admit I dread the next couple of months.

Lois, I am so happy for your good news. By all means celebrate!

I am so sorry you are having to have another neck surgery. Your spirits seem to be very optimistic and that is a very good thing. Sounds like you doctors are keeping close tabs on you.

Thank you for your sweet note. A second opinion pathology is currently being done at MD Anderson in Texas on my final pathology slides. I will feel very much relieved if that report is good also. Smiles and you will be in my prayers for everything to go well with your surgery. Lois

Just thought I would check and see how your mom is doing and if she received the final pathology results. Really hope all is going well for you both, Lois

I met with the head and neck surgeon and he says I need a bilateral neck dissection. I have a metastic HCC on the left side of my neck which may involve a major blood vessel. I will have another CT scan to determine the location of the tumor relative to the artery. I also had an HCC mass on the right side which was removed in May. Hence the need for the bilateral surgery. I'd love to hear from someone who has undergone this surgery. I was hoping it would be done soon, but the doctor will be on vacation so the earliest I can have it is July 23rd.

Dear AliceP,
My concern with all the testing and radiation is that this is a radiosensitive cancer, HCC. Time is of the essence, so hang in there. The 23rd is right around the corner. I am so sorry to hear that this is the fourth surgery. What was your original TNM? Perhaps you were never told. Do you know the tumor size at the time of presentation? Was it in your lymph nodes? How about any distant metastatic disease at the time of your original surgery. If you can find any of this out, you would be more informed about the present prognosis.
I am stage III, but the TNM was T3N0M0 which was very good news. I am followed with blood each 2-3 months, full neck ultrasound each 6 months and travel to Johns Hopkins for endocrinologist and treatment,if necessary, every 6 months. I live in south Florida.
So far only the RAI was needed in the initial phase of the diagnosis of HCC. I had the rhtsh-(Thyrogen) in March, which, while very expensive, showed no recurrence.
Good luck next week.
I am leaving for about 10 days and will have no access to this site. I shall keep you in my thoughts and prayers though and check on you when I return.
Elaine

Hi Marta,
I'm new to this site and was wondering how your mom was doing. I had a TT on June 18th and was also diagnosed with Hurthle Cell Cancer. It was minimally invasive, but I have just had the slides sent to Sloan for a second opinion.
I know you were wondering about treatment centers...look into Sloan-Kettering. They had done a study on HCC.
Good Luck to your mom

I just got my second opinion report back. I called myself and requested they fax it to me. I had a TT on June 11 for hurthle cell neoplasm and over eight other nodules ultrasound positive throughout the thyroid. My DX was hurthle cell adenoma. I have read it is hard to dx a hurthle adenoma from a hurtle cancer. I requested a second opinion pathology with MDA in TX, specifically with a hurthle cell expert. It was reviewed by a thyroid head & neck pathologist and it is stated I had "multinodular adenomatous goiter with hurthle cell changes" in rt and lt lobes, no mention of "the hurthle adenoma" as in first patholgy report which also reported nodular hyperplasia in the right, left and isthmus. Recently I received correspondence from a thyroid cancer doctor/expert at one of the other thyroid cancer support areas. He suggested my pathology slides and possibly the "block" be sent and reviewed by one of three top hurthle/thyroid expert pathologists. I feel like I am never going to come to an end to this! So I have just placed a couple of calls to see about yet a third opinion. Apparently adenomas are frequently misread even by large name cancer facilities? And there exists an on-going debate as to what determines exactly a malignancy, an adenoma from a cancer. I do not want to find out later on a hurthle cancer was missed and then I have a huge problem because I received no treatment. My situation is different. It seems once cancer is dx’d a second opinion would provide additional helpful information for treatment guidelines. I'm just ranting here I suppose. I do not feel confident at all, with all of the research I was basically forced to do on my own, that this hurthle cell adenoma DX or whatever, is 100% accurate. My pathology reports are extremely brief. My FNA was hurthle cell neoplasm by two different pathology institutions. Perhaps after receiving a hurthle expert patholgy review I can finally put this issue to rest. Please let us know about the quality of your second opinion from sloan kettering! I am very interested! Lois