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Hurthle Cell Carcinoma

rebeccamae
Posts: 7
Joined: Jul 2009

Is there anyone out there with Hurthle Cell thyroid cancer?

healthysurvivor
Posts: 2
Joined: Sep 2009

Hi...I had thyroid cancer and it turned out to be hurthle cell. I, like everyone else here, was terrified. I had 2 small children, and was really upset. I had one lobe removed, and then then second lobe 2 weeks later. This was in November, and in February I had the I-131. I am happy to say this all happened 12 years ago!! I am fine, and feel great. The radiation after effects were not too bad - I had some sores in my mouth and throat, and food tasted like metal for awhile. I am now on Synthroid and doing well. Good luck to all of you, and everyone is in my thoughts!!

healthysurvivor
Posts: 2
Joined: Sep 2009

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

Nocaliman
Posts: 9
Joined: Aug 2009

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

Thanks again for posting.
Chris

dolfan
Posts: 3
Joined: Dec 2009

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!

misscancergirl
Posts: 1
Joined: Sep 2009

I had hurthle cell thyroid carcinoma in 1991 at age 32. Since then, melanoma 2x and breast CA in 2006.

mainstreet39154
Posts: 8
Joined: Oct 2009

4.7 cm nodule hurthle cell removed April 2009 with TT
RAI and WBS July 2009

TSH and Tg were on target until this week TSH elevated.
Waiting for appt. with MD Anderson later this month

Anyone else have TSH issues? Synthroid increased 3 times and all was well,numbers decreasing and then BAM it was up! Tg undetectable so I'm happy about that. I'm still a bit apprehensive. Pathology showed vascular and capsular invasion.

mainstreet39154
Posts: 8
Joined: Oct 2009

4.7 cm nodule hurthle cell removed April 2009 with TT
RAI and WBS July 2009

TSH and Tg were on target until this week TSH elevated.
Waiting for appt. with MD Anderson later this month

Anyone else have TSH issues? Synthroid increased 3 times and all was well,numbers decreasing and then BAM it was up! Tg undetectable so I'm happy about that. I'm still a bit apprehensive. Pathology showed vascular and capsular invasion.

nikkidai
Posts: 4
Joined: Dec 2006

Hi, I had Hurthle & follicular Nov 2006. RAI high dose in Jan 2007 now awaiting my 2nd WBS. In doing my research I can see that RAI scans may not be the way to go with Hurthle. Has anyone had a negative WBS, but something has showed up on a PET scan? Has anyone had a positive WBS a year or more after treatment? I am wondering how much experience most Docs even have with hurthle.

wlangley
Posts: 9
Joined: Nov 2009

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

10acity's picture
10acity
Posts: 5
Joined: Nov 2009

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!

samanjan
Posts: 40
Joined: Dec 2009

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

angelboatright
Posts: 4
Joined: Dec 2009

I read all 46 comments posted on this blog and would like to thank Rebeccamae for starting the discussion. For the last couple of months, I have been unclear, in a lot of areas and knowledge, concerning "hurthle cell". Thank you to all of you for sharing your true life stories and knowledge. It's one thing to be diagnosed with the possibility of having thyroid cancer, but I am concerned about the invasive obstacles (without solid medical facts) to diagnose/rule out cancer, and the additional surgeries required.

How does someone develop hurthle cells?? What are DNA changes??? I am someone who never underwent prior exposure to radiation treatment, never lived near a nuclear plant, or had a family with a history of thyroid cancer....

For the last 4 years, I have experienced problems with weight gain, tiredness, blury vision, dizziness, etc. I am faithful with my annual and PRN medical visits each year. For the last 4 years, my symptoms have prompted thyroid blood work almost annually, which has always resulted in acceptable levels. I recall in April of this year, crying to my physician's nurse after she advised all my blood work was fine, yet again. I stated to her that I know there is something wrong with me, not that I am wishing this. Six months later, a lump was present in the front of my throat (and for the past several years, I've had numerous episodes of swelling in my lymph nodes and neck area).

I want to ensure I receive the best medical treatment to avoid additional surgeries and reocurrences. I haven't undergone some of the testing some of you have shared. I don't want to just go through this surgery without knowing all the facts. I have requested x-rays of my chest, PET scans, but told not necessary. I am now having 2nd thoughts of postponing my surgery on the 15th until I know more...

wlangley
Posts: 9
Joined: Nov 2009

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.

samanjan
Posts: 40
Joined: Dec 2009

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.

samanjan
Posts: 40
Joined: Dec 2009

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!!

samanjan
Posts: 40
Joined: Dec 2009

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

BellsAngel69
Posts: 102
Joined: Dec 2009

This is my story. I found a hard lump underneath my collar bone in my neck one day. I was rubbing my neck and found it purely by chance. This was Dec. 2003. I immediately freaked out. I knew it was a tumor of some kind, just knew it. I went to the doctor, they sent me to a surgeon who removed it, and low and behold, it was Thyroid cancer. I had a total thyroidectomy in Feb. 2004, and then had to wait until July to have my RAI because when I had a MRI they used iodine based dye when they weren't supposed to. I had my RAI in July 2004, and then the scan, which was clean. For the next three years I did the low-iodine diet and RAI scan and I was clean. Then the following year my doctor let me skip the scan because my TSH levels had been undetectable. I had my blood test done six months later and my TSH was elevated. My doctor ordered another scan and it showed uptake in my left hip bone. I had another RAI treatment in the hospital in Sept. 2007. I thought the treatment had worked. Six months later I had another blood test and my TSH level was elevated even higher, so he ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't do the job, so I then had to have surgery to remove the spot on my hip bone in Sept. 2008. After the surgery, I had blood tests done again and my TSH level was lower but not back to zero. My doctor wasn't too concerned, and told me to come back in six months for another blood test. I had my latest blood test in Nov. 2009. I got a call THREE WEEKS after from my doc saying my TSH levels were elevated even more . . . four times higher to be exact. I'm im a total panic now. Even though my PET scan showed I was clean, my blood tests are saying different. So now I have to do the diet yet again, and have both a PET scan and total body scan with the Thyrogen injections.

It's been so frustrating to me. I've searched and never found a board that had others that have been going through what I have. I just really need someone to talk to about this. I've always kept upbeat about it all, but I thought when I was diagnosed that after I had my thyroid out I would be cured, just had to be checked every six months. Six years and two reoccurences later, I'm starting to doubt everything they've been telling me.

If anyone out there would like to talk, please contact me. I need support now so bad you don't know.

samanjan
Posts: 40
Joined: Dec 2009

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

BellsAngel69
Posts: 102
Joined: Dec 2009

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

Patti

persimmony's picture
persimmony
Posts: 17
Joined: Jan 2010

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

samanjan
Posts: 40
Joined: Dec 2009

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

persimmony's picture
persimmony
Posts: 17
Joined: Jan 2010

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?

BellsAngel69
Posts: 102
Joined: Dec 2009

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!

persimmony's picture
persimmony
Posts: 17
Joined: Jan 2010

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...

jadefu
Posts: 1
Joined: Jan 2010

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.

samanjan
Posts: 40
Joined: Dec 2009

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

BellsAngel69
Posts: 102
Joined: Dec 2009

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.

BellsAngel69
Posts: 102
Joined: Dec 2009

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.

persimmony's picture
persimmony
Posts: 17
Joined: Jan 2010

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.

BellsAngel69
Posts: 102
Joined: Dec 2009

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.

samanjan
Posts: 40
Joined: Dec 2009

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:)

BellsAngel69
Posts: 102
Joined: Dec 2009

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.

samanjan
Posts: 40
Joined: Dec 2009

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

BellsAngel69
Posts: 102
Joined: Dec 2009

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!!

samanjan
Posts: 40
Joined: Dec 2009

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!

BellsAngel69
Posts: 102
Joined: Dec 2009

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

samanjan
Posts: 40
Joined: Dec 2009

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

BellsAngel69
Posts: 102
Joined: Dec 2009

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!

samanjan
Posts: 40
Joined: Dec 2009

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.

loispol1
Posts: 84
Joined: Feb 2010

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.

sfl67
Posts: 55
Joined: Nov 2009

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.

sfl67
Posts: 55
Joined: Nov 2009

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.

loispol1
Posts: 84
Joined: Feb 2010

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

sfl67
Posts: 55
Joined: Nov 2009

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

loispol1
Posts: 84
Joined: Feb 2010

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?

sfl67
Posts: 55
Joined: Nov 2009

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.

samanjan
Posts: 40
Joined: Dec 2009

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.

loispol1
Posts: 84
Joined: Feb 2010

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.

loispol1
Posts: 84
Joined: Feb 2010

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

samanjan
Posts: 40
Joined: Dec 2009

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

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