CSN Login
Members Online: 11

Hurthle Cell Carcinoma

rebeccamae
Posts: 7
Joined: Jul 2009

Is there anyone out there with Hurthle Cell thyroid cancer?

BellsAngel69
Posts: 102
Joined: Dec 2009

Yup. I'm on my 3rd recurrence of Hurthle Cell cancer, surgery number 5 coming on May 4th. Long story short, diagnosed with HCC Dec. 2003. TT Feb. 2004, followed by RAI. Subsequent check ups for three years, fine and dandy. 2007 scan showed a recurrence. Had another dose of RAI, but it didn't work. A year later had surgery for a lesion on my left posterior hip. Easy surgery, outpatient, 1 1/2 hour surgery (or procedure, as they like to sugar coat it). Subsequent blood tests showed my thyroglobulin was still rising. Subesequent PET scan in May 2009, clean. Blood tests in Nov. 2009 showed my thyroglobulin had quadrupled since May. Subesequent PET scan in Jan. 2010 showed spots near my stomach. An endoscopy, CT scan and liver biopsy later, metastasis to my liver. Liver resection in March 2010. Subesequent blood tests were clean until Nov. 2010. Thyroglobulin rising again, from undetected below .2 to .3. Blood tests in Feb. 2011 showed elevated thyrglobulin up to 4.5. PET scan showed another metastasis, to the same spot in my left hip bone, just behind the previous disection and bone cement.

If you can believe it, I was actually relieved when my doctor told me it was in my hip bone again. Why? Well, a hell of a lot beter than being in my liver again. That was a really tough surgery. Also, it's basically the same surgery as 2008. He can use the same incision spot, so just will be the same scar. Recovery time is only 3-4 weeks.

Am I happy to have another recurrence? Hell no! But I just thank God it wasn't my liver again. The truth is, I'll never be cured of this cancer, NEVER! I look at it as a nuisance, if you can ever think of any kind of cancer as being a nuisance. It's a disease that's not curable.

So, I will carry on, keep the smile on my face to hide the aggravation and pain, and know it's always 5 o'clock somewhere. I just want to be there, at 5 o'clock, always and forever, whether in reality or just my mind, it will always be happy hour.

To all my sisters and brothers fighting HCC or any kind of cancer, I salute and support you. Though our paths may not be the same, they are parallel.

Hugs, Patti

missythyca
Posts: 2
Joined: May 2011

I'm new to this, within 6 weeks, nodule found, it grew, US done then biopsy. Im seeing the folks at MD
Anderson in Houston. Just got in this week, met surgeon today. Scheduled lobectomy for may 18, 2011. yay i'm so relieved. no spread either, i've been a basket case!
anyone like to chat one on one about Hurthle cell, I'm game.
melissa@kanapapijosa.com

thanks

LBlackman
Posts: 113
Joined: Mar 2011

I hope your surgery goes well. My cousin was diagnosed in Houston with thyroid cancer, hers is not hurthle cell like mine is. I haven't found very many people with hurthle cell cancer at all. I was 37 when I was diagnosed and according to my Dr. that is very rare for a young female to be diagnosed with that. Now I am seeing more and more young females diagnosed with it. I am 42 now. I am preparing for my fifth scan. The others have come back clean, but I have never been on any food restrictions prior to my scans and I was doing the atkins diet, which has alot of high iodine foods and the nurse told me that may have concealed some cancer growths. I am doing a lighter form of the low iodine diet on my own so we will see how this scan turns out.
My cousin lives in Houston and said the medical care there is wonderful. They are very knowledgeable and informative. I think with hurthle cell, since it is so rare, they are still learning as how best to treat it. Are you having both sides of your thyroid removed? Have they diagnosed hurthle cell cancer? There is a non-cancerous hurthle cell. If you are on facebook, there is a page called thyroid 411. There is alot of support there also. If you have any questions, please post them. I didn't know about this website when I was first diagnosed but am very thankful for it now.
Blessings
Lynne

missythyca
Posts: 2
Joined: May 2011

I underwent a R thyroid lobectomy on the 18th as planned.
I am a nurse so I've been diving into all the medical research as much as I can, but I tell you what, after reading everyone else's stories, it's nice to know how much you are all finding out about your conditions, reading and researching, and being active in your health care.

She did take a close by lymph node and sent it for frozen section during, she said it looked "juicy".
Results on that were benign.
I have to wait 5 business days to see if the Hurthle cell tumor is benign or malignant. my FNB said "suspicious for..."

So I'm in my waiting game stage.

My tumor was 2.8cm, oblong like an egg. From the 1st US it measured 2.6cm but they said dont consider it growly unless it was more than 30% increase. on the 2nd US before the surgery, they found an additional tumor but it was miniscule in size, like .4cm

My 1st endo i chose said to go have a TT but when i went to MD Anderson, she recommended just a lobectomy due to my age, I'm 38 and the size of tumor. She said if it is malignant then we will just do another surgery to remove the other half.
i agreed with her rationale. #1 I'm young, #2 no tumor in other lobe, so if benign then i have my thyroid to make my own hormone. #3 if 2nd surgery is due because of malignancy then it's not that big of a rush, 3 months, she said. again because there is not a tumor there, and she wants me fully healed, no inflammation in the way of her seeing what she needs to see in there.

I was scheduled to be there just 23hrs after the surgery, they kept me a few more hours.... but then i started having mucus come up when i coughed. like a chest cold, very bad, yucky yellow phlegm with a little bit of blood. so i'm guessing it was just my dumb luck that i get a cold after having surgery, coughing is not fun.

I am mentally in a better place now that it is out, before it was driving me nuts, just waiting.

MD Anderson, wow, what a phenominal place, I loved everyone there.

thanks for the info on the FB page.

sunnyaz
Posts: 582
Joined: Oct 2010

That's odd.... my dad was in the military here in Tucson during the fifties. He died of cancer about five years ago. We don't know where it originate however, it metastasized everywhere before the doctors finally figured out it was cancer. We opted out of the autopsy. I was diagnosed with Papillary Thyroid cancer in 2009, only five years after he died. My mom has had MS for more than 44 years and had it when she was pregnant with me but we didn't know it at the time. I was thirteen when they finally gave her a definitive diagnosis. No MRI's then so it was a process of elimination and they didn't know much about it back then. I do know that we were all exposed to TCE from Hughes Aircraft (now called Raytheon Missile Systems) dumping toxic chemicals in the desert south of Tucson. My Grandmother and my Grandfather both died of cancer. I was born in 1967. That was the year my Grandfather died and my Grandmother died about thirteen years ago from, get this; cancer that started in her eye ball!

I agree that there is nothing lucky about Thyroid cancer. I would give anything to have a normal functioning thyroid again. NOBODY understands how we feel except those without a Thyroid. I am so different than I used to be. I feel like just dragging my _ss to work every day is such a chore. I hate it. I just want to retire but I have at least twenty years to go. Wish I could win the lottery and become a Philanthropist. I could and would help so many people.

By the way, my doctor won't let me take the generic form of T4. He insists that I take name brand Synthroid. He said that the generic forms vary too much in dosage. I agree with him and have been paying the extra money every month to be on the brand name. I haven't had fluctuations in my TSH levels. I haven't tried any of the Antidepressants however. I tried them in the year before my diagnosis and they just wacked me out and I had weird allergic reactions to them. My doctor and counselor said I was "Bi-Polar". Truth was; it one of the symptoms of hypothyroidism due to the cancer.

Blessings,
Julie-SunnyAZ

sr_mccreery
Posts: 12
Joined: Aug 2009

Yeah, I, too, had Hurtle cell carcinoma. I am 40 years old, and had a total thyroidectomy at 38. It used to scare the heck out of me, but after a while you just stop dwelling on it so much and take the "what can we do to fix this" approach. Not saying I don't panic after a biopsy awaiting the results, but thus far, I haven't had any reoccurances. I've had no ill effects from the cancer at all. Best of luck to you, and feel free to ask me if you have any questions. Any of you. I am also an RN. Merry Christmas everyone!!!

kristi0
Posts: 3
Joined: Jul 2011

Good morning, all. I'm new here and we recently got the diagnosis that my mom (age 57) has Stage IV HCC. It's currently metastasized to her lung and bones in her back. She underwent back surgery 3 weeks ago and that's when they found it. We had originally thought it was early osteoporosis but were shocked to hear the C word. Later, a fine needle biopsy was done on her thyroid when a scan showed 3 nodules. One of the three was cancerous and was determined to be HCC. She is schedule for a complete thyroidectomy on Friday (15th) and will undergo radiation for her back as well in the coming weeks to treat whatever remains of the cancer there. She'll begin radioiodine treatment in 6 weeks with the hopes that it takes. We're all trying to be very optimistic about it all and also realize that the odds aren't in her favor for it working. Heck - the odds were against her to get this particular form of cancer to begin with, so why not be in the minority for the RAI treatment to work, right? They have yet to do an MRI on her brain but that is scheduled for sometime in the next couple weeks as well to see if it's moved there at all. We're in IA so Mayo isn't far from us, if we get to the point of needing additional help. Any advice/support is much appreciated.

Kristin

samanjan
Posts: 40
Joined: Dec 2009

Deaar Kristin,
I was so sorry to hear of the diagnosis of your mother. It was hiding in her back all along then, not her thyroid.
Yes, this is rare, HCC no question. Can it be beaten...yes possibly. Is there any possible way for you to read her path report and respond. Size of tumor, etc.,
RAI does not work all that well, but at present, is our only option. It was not that bad and I had a very good outcome. I can readily put myself in your mom's shoes, as I am 58. My stage was III for which I am eternally grateful with no distant metastatic problems.
My advice is this... radioactive tumors need as little radiation as possible. Certain tests need to be performed, but beware of the incidental (aipports, dentisits, etc.,)
Please keep me posted and best of luck to all.
Elaine

kristi0
Posts: 3
Joined: Jul 2011

I've actually mentioned this to my mom, that she needs copies of all her path tests and such. She had 3 nodules in her thyroid, only one of which was cancerous. It was 2cm, so not huge or anything. She starts radiation on her back tomorrow. She's to see the dentist ASAP since they'll put her on a bone med that will impact her teeth if she needs work done at the time. Sounds like they're pushing the RAI treatment to 6-8 weeks now. We just want to get the show on the road and see if it's going to work. If not - move on to the next options. Trying to stay positive and make the most of whatever we have.

Thanks for your response, Elaine.

Kristin

samanjan
Posts: 40
Joined: Dec 2009

Dear Kristin,
RAI is preventative medicine which is only 10% effective with HCC. It is used to ablate remnant thyroid cells. In your mother's case this had already happened. Her HCC has already metastasized to lungs and spine. I am reminded of closing the barn door after the horses escaped. My opinion is that RAI has no place at stage IV with known metastatic consequences.

samanjan
Posts: 40
Joined: Dec 2009

Dear Kristin,
RAI is preventative medicine which is only 10% effective with HCC. It is used to ablate remnant thyroid cells. In your mother's case this has already happened. Her HCC has already metastasized to lungs and spine. I am reminded of closing the barn door after the horses escaped. My opinion is that RAI has no place at stage IV with known metastatic consequences.

unknown stalker
Posts: 1
Joined: Aug 2011

Hi,

I was just told that I have hurthle cell carcinoma, and papillary carcinoma both lobes of my thyroid had both types, I had a complete thyroiectomy on Aug. 1. Has any one out there been told you have more that one type cancer at the same time. I'm in shock.

csm2007
Posts: 25
Joined: Dec 2010

Yes, I was in shock as well! Def not too many out there of us with multiple kinds at the same time. I was DX in Dec of 2010 with Hurthle cell carcinoma 4.5 cm 33 grams in my left lobe and papillary tall cell 1.1 cm 9 grams in right lobe in January 2011. I had two surgeries; they removed only my left lobe the first surgery then went back in a month later and found the papillary in the right. I have lymph node involvement, and now cervical lymphs are prominent after RAI dose. Still undergoing treatment as my first round of RAI did not work completely. Rising TG and TSH the whole time after surgery and RAI, even as of 2 weeks ago my numbers are still climbing. My Synthroid is still being upped, right now at .125 mcgs. I have spots on my liver and ribcage that are areas of concern. Awaiting Pet and C/T scan that are scheduled soon. Sorry we have to meet under these circumstances but if you have questions that I can answer I'll be glad to! --csm2007

bklowe
Posts: 3
Joined: Jul 2011

I am Kristin's sister, Kelley. My mom received the phone call that the RAI did not take. It's not that I'm surprised but more that I feel like we are at a loss with what to do next. Has anyone done any clinical studies or trials that have had a positive outcome? I'm willing to look anywhere considering chemo seems to be useless and I'm assuming that is what the doctors are going to want us to do. That is just not good enough and I'm ready to move on. Any info would be great!

Thanks,
Kelley

rebeccamae
Posts: 7
Joined: Jul 2009

A clinical trial for Nexavar was recently completed and found to be helpful It hasn't been approved yet though.

Mccammon5
Posts: 2
Joined: Sep 2011

I was told I had hurthle cells after my needle biopsy in June of this year. After my surgery (july)I was told it wasn't hurthle but papillary cancer. I have been on the "diet" now for six days. I get my first injection at 9am, my second on Tuesday, and I131 on Wednesday. I'm so new at all this.... I didn't realize that every time I get my numbers checked I have to go back on the diet..... I no love the diet!
Katherine

dolfan
Posts: 3
Joined: Dec 2009

Hi all,

I had a goiter which runs in my family on my mom's side. Many aunts, grandma, mom, etc. have all had benign goiters. I was not so lucky. After going to my PCP, then endocrinologist I had FNA and was told inconclusive for cancer so he recommended I see a surgeon. The surgeon did not initially want to remove my entire tyroid since I was only 43. After reading my chart he decided to remove it all. Thank God he did. I had a 4cm Hurthle Cell Carcinoma in my right lobe. I had RA 131 treatment which I was told was to kill off any remaining thyroid cells. I had 100 mlq of RA 131 and stayed in isolation for 3 days because I have little ones (now 6 and 3). I had a scan right after that and everything has been fine. I had my synthroid adjusted once. I have been trying to lose weight and finding it extemely hard...not sure if that is due to lack of thyroid or not?!? When I first found out in Dec 2009 after my surgery I was shocked. 3 days of endless internet research and lots of talking with family and friends and praying. In January 2010 my scan was normal. All of 2010 was fine. In January 2011 I had another scan. This time activity showed in my neck area. Endo advised I wait 6 months and do ultrasound...blood work was fine. 6 months later u/s showed no thyropid tissue BUT 2.5cm and 2.3cm enlarged lymph nodes AND blood work now shows antibodies where it never did before. What does all that mean? I am now thinking maybe I shouldn't be so trusting and patient and maybe go to get a second opinion? I am in FL and will travel for that I don't mind. He advised me to wait 6 months and do another whole body scan but I moved my appt up from March 2012 to January 2012 and now am thinking about going to a local hematology/oncology doctor. What does everybody out there think???

Saritav
Posts: 9
Joined: Nov 2011

Did any of you have pain as a symptom for your cancer and did you have a small nodule? The reason I ask is that my oncologist today suggested that my pain in my throat/neck is not related to my 2 cm nodule which they suspect hurthle cell neoplasm. She said even if it's cancer, there is a 0 chance it would cause pain at this size and has referred me to neurologist. I'm in so much pain, I feel pretty hopeless. Ive posted another board but haven't heard back from many people except one who has been very helpful.

dunatuna
Posts: 4
Joined: Apr 2011

In 2001, I had hurthle cell carcinoma--2.3 cm with angiolymphatic invasion. It was stage 2 and I had my thyroid removed, in two surgeries. It was discovered at a routine physical exam by my doctor and I was referred to a surgeon. I never had any pain or discomfort or hoarseness while speaking. No symptoms at all. My main concern now is that the endo wants me to up my synthroid and I can't handle the side effects (heart racing, sweating, palpitations), but as I said I never had pain.

nootrino
Posts: 1
Joined: Nov 2011

Hi everyone. New user on here. Was wondering if this is the only thread that discusses Hurtle cells issues or if there is another one on this board or elsewhere. I am looking for resources and people who can offer their firsthand experiences. Much appreciated.
Here is my story. 48 year old male. Went to doctor and out of blue he wanted to perform an ultrasound on my thyroid. No symptoms or pain. Thyroid tests normal, albeit now that I look at them they are on the upper normal and lower low of normal (wondering if that in itself is a sign of thyroid issues that doctors ignore). Anyways, he told me 1.5cm cyst in left lobe. "99 % of these are usually nothing". I asked "what would you do". He said that if he were in my shoes he's have an FNA done, which I did and two weeks later found out "suspicious for Hurtle Cell neoplasm". Don't remember exact veriage but variant size Hurtle cells found single and clustered. "some transgressing vessels". "no lymphocytes". "erratically placed macronucleoli". Sorry for spelling but doctor said the result was "not completely normal" but NOT CANCER. Hmmm... Not sure how he would know that other than perhaps the FNA results offered some insight. In any case, picked doctor in Manhattan who is subject matter expert and saw him a few weeks ago. He advised removal of left thyroid and isthmus. Will do frozen section during surgery although he doesn't have much confidence in that he mentioned. Final pathology will indicate whether cancer or not, which he said is about 20% likelihood for my case, age, etc. Although I'm 48 he felt I fell more into the under 45 statistical group, or perhaps he's just being optimistic. So surgery in a few weeks.
Some questions: my ultrasound was in late August, surgery in December: am I waiting too long. Both internist and thyroid surgery didn't feel urgency but said must have this dealt with no later than 3 months.
Has anyone had similar FNA results, profile and tumour size?
Understandably while I've been told not to get worried, there is a chance this could be cancer but surgeon said I'd enter at Stage 2. Which still frightens me as I have small children and there is very little information about this type of cancer and prognosis on the web. The stuff I have found so far is all over the place.
Anyways, not to rant. I am glad people are posting there stories on here, I've read the entire thread as far back as 2009. I do notice though that people do stop posting after a while. I'm just hoping that this is a sign that they have their condition under control and are living their lives and not dwelling on their conditions too much.

catladysue237
Posts: 25
Joined: Mar 2011

I have Hurthle Cell. In January, they removed my left thyroid. It took 3 weeks to find cancer. Even though they found very few cells, I had a Total Thyroidectomy in April because this is an aggressive type of thyroid cancer. At this point, I almost wish I had left the right side in as I have not felt normal since then. I am either so tired I can barely stay awake or my heart is racing so much I call an ambulance. Before my TT, I had never been in an ambulance. Since the first of the year I have been 4 times.So much for "this won't have much effect other than taking meds"!

carnette
Posts: 2
Joined: Jul 2012

Hello,
I just read your post and I wonder how you are doing eight months later?
I am a 55year old female and was diagnosed this year 2012,on July 17th, with a Benign Follicular nodule on my right side and Follicular neoplasm hurthle cell type on my left.
I have so many questions! From all the posts I read, what the general consensus seems to be is that you don't get rid of this type of cancer...ever! Is that the case or is there anyone out there who has actually "beat" this thing? I am getting ahead of myself because I am told that it is impossible to determine if the hurthle cells are cancerous until they are surgically removed and tested, so I don't even know whether I have cancer or not. I was told that there is a 20-30% chance that I do not have cancer. That sounds good, but if I don't have cancer, then I want to keep my thyroid. So frustrating! I have heard that a PET SCAN will determine if it is cancer and if it has spread. Does anyone know about this?
I have gone on a raw food diet and whole food supplements. I'm calling the ENT to schedule the surgery. I would like to be retested just before surgery to see if the nodules have changed. If they are smaller, then I would cancel the surgery, continue on my natural protocol and get ultrasounds and FNA every month to watch it. If they are larger or the same, then I will concede to having the surgery. Has anyone out there ever tried this sort of approach.
I guess the most frustrating thing about this is that, from what I am picking up on, the PET SCAN could give a lot of much needed info, but because of the COST, the insurance companies don't want to pay for it. It seems as if Doctors automatically push surgery. That is the easy way out, but I believe God put the thyroid in my body for a reason and if it doesn't need to come out then it would be unprofessional to suggest otherwise. I want to know if I NEED surgery before I actually have it and if a PET SCAN can determine that then regardless of the COST, that is what they should recommend!
Just venting and want to know if anyone thinks the same or if anyone has a thought about this.
Thank you and by the way, I am a praying person, and when I read these posts, I do pray!
Thank you so much and I hope to get many responses!

sr_mccreery
Posts: 12
Joined: Aug 2009

Yeah, I have Hurtle cell, too. Hard to find many like us :(. I am status-post total thyroidectomy and have had no problems! :) Merry Christmas.

rebeccamae
Posts: 7
Joined: Jul 2009

I don't see where to start a new post so I'll reply here. If someone would like to copy and paste it so others could read it, that would be fine. My husband had his first thyroid surgery in 2006. The last few years he has had lumps removed from his neck about every 6 months. This spring he started having leg pain. He had a scan and found out that it has metastasized to his sacrum. Tumor is impinging sciatic nerve and causing major pain. He frequently has his pain meds upped. He has a patch and is also taking dilodid. I'm not sure of the spelling. Now he has a lump on his head that is also hurtle cell. There is a hole in his skull from it. He has completed radiation and plans to start chemo soon. They have completed clinical trials on Nexavar for hurtle cell and it has helped shrink tumors. Be sure you find out exactly what part of your body is being scanned. We thought his whole body was being scanned, but he was only being scanned to the waist. When they scanned his neck, he thought his head was also being scanned too. This cancer spreads to bone. if you have back or leg pain, waste no time in finding the source of your pain. This is not a pretty picture, but thought I'd post so you know what it can do. The oncologist told him it was unlikely that it would shorten his life spanish. Don't let anyone tell you that!!!

IrishTheresa
Posts: 2
Joined: Feb 2012

Hello everybody, and thanks to everyone for sharing information and thoughts. My dad had his thyroid removed 11 years ago. 18 months ago he found lumps on his neck and had a huge surgery on his neck, in a H shape, to remove lymph nodes etc. We were told the surgery went extremely well. Dad is physically a very strong person and is in really good health (apart from the cancer!) so surgery suits him very well. He had radioactive iodine treatment after this.
However, it spread and is now in both of his lungs (one lobe on each side). I am really, really bad at understanding medical matters but this is one case I don't want to get wrong. My dad is the best dad in the world and I want to make sure he has every chance. I'm in Ireland and was wondering if you all thought he would get better care abroad, and if so where. He had more radioactive iodine treatment before Christmas and we have just been told it didn't work. He has now been referred for possible chemotherapy. From what I've been reading chemo does not work on hurthle cell tumours, or is this cutting-edge stuff they are going to try on him??? Sometimes I wish I was a doctor - at least them I'd know he would get the best care available. So frustrated and angey with myself right now because I am so ignorant and don't know what to do, if you know what I mean. I suppose everyone goes through this! Anyway, please let me know what you think. x

rebeccamae
Posts: 7
Joined: Jul 2009

My husband has hurthle cell and he is going to be participating in a clinical trial through the Mayo clinic in Rochester, MN. He will be taking a form of chemo in pill form. You should find out if your dad could get in on that. A very similar drug has proven to help. The clinical trial for that one has closed and it hasn't been approved yet. The drugs are called serafanib and Nexavar. Hope I spelled them right.

rebeccamae
Posts: 7
Joined: Jul 2009

My husband has hurthle cell and he is going to be participating in a clinical trial through the Mayo clinic in Rochester, MN. He will be taking a form of chemo in pill form. You should find out if your dad could get in on that. A very similar drug has proven to help. The clinical trial for that one has closed and it hasn't been approved yet. The drugs are called serafanib and Nexavar. Hope I spelled them right.

IrishTheresa
Posts: 2
Joined: Feb 2012

Hello Rebeccamae. Thank you very much for your reply. I have good news. My dad started on Nexavar nearly four weeks ago. After three weeks taking tablets twice a day, he returned to the oncologist and had all the same tests done.

THE TREATMENT IS WORKING!

After just three weeks! You could actually see on the lung xray where the tumours were getting smaller, and one seemed to have disappeared completely. We will know much more after he has a proper scan (mri or catscan?) at his next checkup, but for the moment it is just brilliant news for us. He is on the highest dose and so far the side effects are managable. He has days when he is too tired to move and other days when he is out tending his garden. Hopefully this will work for your husband too. I must google serafanib now! Please let me know how things are going with your husband. Hopefully both our lovely men will beat this horrible disease!

danjo2
Posts: 4
Joined: Apr 2010

Hi, just a word of encouragement for all of you out there.
My husband was diagnosed back in 2006. Went through all the wrong treatments at first
Cancer spread to spine and lungs. Radioactive Iodine does not work, reg chemo does not work, after trying everything, went on Nexavar. That worked for a year and a half, next on Sutent. Been on that for 2 years and still doing well. Neck tumors have reduced and some have necrotized. Lungs still growing but at a very slow pace. Quality of life is good, some days great and others tired and sleepy, but for someone who was not to survive more than 6 months without treatment (now 6 years) doing great. Can actually still ride his harley once in a while! For all those trying these treatments, don't give up when the side effects seem unbearable. If all goes well, your system adapts and the side effects reduce (the palms and feet especially) Just tender skin now. I will you all the best and if everyone could have the same team of doctors that he has, you would all be around for a long time xxx

danjo2
Posts: 4
Joined: Apr 2010

Hi, just a word of encouragement for all of you out there.
My husband was diagnosed back in 2006. Went through all the wrong treatments at first
Cancer spread to spine and lungs. Radioactive Iodine does not work, reg chemo does not work, after trying everything, went on Nexavar. That worked for a year and a half, next on Sutent. Been on that for 2 years and still doing well. Neck tumors have reduced and some have necrotized. Lungs still growing but at a very slow pace. Quality of life is good, some days great and others tired and sleepy, but for someone who was not to survive more than 6 months without treatment (now 6 years) doing great. Can actually still ride his harley once in a while! For all those trying these treatments, don't give up when the side effects seem unbearable. If all goes well, your system adapts and the side effects reduce (the palms and feet especially) Just tender skin now. I will you all the best and if everyone could have the same team of doctors that he has, you would all be around for a long time xxx

danjo2
Posts: 4
Joined: Apr 2010

Hi, just a word of encouragement for all of you out there.
My husband was diagnosed back in 2006. Went through all the wrong treatments at first
Cancer spread to spine and lungs. Radioactive Iodine does not work, reg chemo does not work, after trying everything, went on Nexavar. That worked for a year and a half, next on Sutent. Been on that for 2 years and still doing well. Neck tumors have reduced and some have necrotized. Lungs still growing but at a very slow pace. Quality of life is good, some days great and others tired and sleepy, but for someone who was not to survive more than 6 months without treatment (now 6 years) doing great. Can actually still ride his harley once in a while! For all those trying these treatments, don't give up when the side effects seem unbearable. If all goes well, your system adapts and the side effects reduce (the palms and feet especially) Just tender skin now. I will you all the best and if everyone could have the same team of doctors that he has, you would all be around for a long time xxx

rebeccamae
Posts: 7
Joined: Jul 2009

My husband had a scan in June and he has no new tumors and none of the existing ones have grown! He currently has a mass on the back of his head, a lump on his neck, nodules in liver and lungs and a hole in skull and sacrum.

carnette
Posts: 2
Joined: Jul 2012

Hello,
I just read your post and I wonder how you are doing eight months later?
I am a 55year old female and was diagnosed this year 2012,on July 17th, with a Benign Follicular nodule on my right side and Follicular neoplasm hurthle cell type on my left.
I have so many questions! From all the posts I read, what the general consensus seems to be is that you don't get rid of this type of cancer...ever! Is that the case or is there anyone out there who has actually "beat" this thing? I am getting ahead of myself because I am told that it is impossible to determine if the hurthle cells are cancerous until they are surgically removed and tested, so I don't even know whether I have cancer or not. I was told that there is a 20-30% chance that I do not have cancer. That sounds good, but if I don't have cancer, then I want to keep my thyroid. So frustrating! I have heard that a PET SCAN will determine if it is cancer and if it has spread. Does anyone know about this?
I have gone on a raw food diet and whole food supplements. I'm calling the ENT to schedule the surgery. I would like to be retested just before surgery to see if the nodules have changed. If they are smaller, then I would cancel the surgery, continue on my natural protocol and get ultrasounds and FNA every month to watch it. If they are larger or the same, then I will concede to having the surgery. Has anyone out there ever tried this sort of approach.
I guess the most frustrating thing about this is that, from what I am picking up on, the PET SCAN could give a lot of much needed info, but because of the COST, the insurance companies don't want to pay for it. It seems as if Doctors automatically push surgery. That is the easy way out, but I believe God put the thyroid in my body for a reason and if it doesn't need to come out then it would be unprofessional to suggest otherwise. I want to know if I NEED surgery before I actually have it and if a PET SCAN can determine that then regardless of the COST, that is what they should recommend!
Just venting and want to know if anyone thinks the same or if anyone has a thought about this.
Thank you and by the way, I am a praying person, and when I read these posts, I do pray!
Thank you so much and I hope to get many responses!

marie.r
Posts: 2
Joined: Oct 2012

http://mslwc.blogspot.com/?m=1

This blog by a man with hurthle cell cancer was very helpful to me. He does a great job of mapping out the journey. If the link doesn't work google "my short life with cancer hurthle cell" and it should pop up. He said he named it that because he plans to beat it in a short time.

I am new to Hcc so please share information on how you are all doing now and any tips on genetic mapping of rumors or things I should be aware of starting this journey

smerth
Posts: 2
Joined: Nov 2012

Just finished reading most of his blog written over the last 5 years and it was very informative. Glad to know that someone is doing well against Hurthle Cell Carcinoma. His never left his neck - so great news! Mine on the other hand is on my bones, in my lung, and my adrenal gland. Not sure what's next but more blood work and PET scans will tell us more soon.

nessie421
Posts: 1
Joined: Apr 2013

Glad to find this thread! I was just diagnosed with Hurthle cell cancer and have been looking for people since everyone says, "Oh, thyroid cancer! That is the good cancer! I knew <so and so> with thyroid cancer and they were just fine! You have nothing to worrry about!". I know people mean well and don't want to be a downer by saying, "Actually, my type of thyroid cancer is rare and more serious." My mother died of brain cancer, so in my mind cancer is synonymous with losing my mother. I am 32 years old and have a two year old daughter who is the light of my life. The thought of her growing up without her mother and me not seeing her grow up destroys me.

Anyway, still getting over the shock and just quite angry now and ready to see if this motherf-er has spread and what to do. I had just a partial thyroidectomy three weeks ago as the FNA and slice checked during surgery were both negative, so I have to go back in at the end of May to get the other half taken out. I meet with a radiation oncologist in two weeks and with an endocrinologist specializing in thyroid cancer on May 10th.

Anyone care to write back and give an update of how they're doing? I know I would really appreciate it! TIA

Jane16131
Posts: 5
Joined: Mar 2013

Hi Nessie!

I'm so sorry about your diagnosis of Hurthle Cell Carcinoma, but the good thing is that you are 32 years old and the prognosis is way better for someone under 45 years old.  Hurthle Cell Carcinoma is usually a more aggressive type of thyroid cancer, but again your age and the fact that you are female are really good indicators for a good outcome. 

In my opinion you need to go to a surgeon that does lots of thyroid cancer surgeries every year.  There aren't a lot of these guys around, so do your research to see if one is nearby. 

My husband had a total thyroidectomy in October, but also had metastases to the lymph nodes.  He had 50 lymph nodes removed and 14 were cancerous.  He now has 8 nodules in both lungs, but he is a diabetic and the Pet Scan results were skewed because of it being sugar based.  We now have to wait until July for a CAT scan and a Thyrogen study to see if the nodules in his lungs are cancer and to find out if they are growing.  My husband's prognosis isn't great because of his age, so Nessie, keep a positive attitude and read as much as you can about your cancer.  It will give you an idea of what's next and understanding on why they are doing certain tests. 

Good luck to you and enjoy that baby girl.

 

 

 

 

 

Shunterrn
Posts: 1
Joined: May 2013

Hi,

 

i just had a partial thyroidectomy done two days ago. I had a 4cm nodule on my left thyroid. Because of the size I skipped the fna. The doc did a frozen section and it came back as hurthle cells. The frozen was negative but I guess I have to wait for the final path report. I'm 31 and have to young children ages 3 and 14 months. How big was your nodule? I'm reading that size plays a role in hurthle cell cancer. I'm a little anxious

mhc4165
Posts: 46
Joined: Dec 2008

Most benign nodules grow too,and I have found *so* many people on thyroid and general health boards who had very large nodules,some with a lot of hurthle cells,and they were benign when removed.The size doesn't really tell you anything,it has more to do with when you found the nodules,either cancerous or benign. If the benign or cancerous nodules were found after only a few years from when they formed,they will be smaller when found,if they were found 10 years or more after they formed they both will be bigger. Many people have had papillary thyroid cancers found by accident that were 4,and 5mm and thyroid cancers 1cm,2cm,3cm,4cm,and many people have had benign nodules that were 1cm,2cm,3cm,etc and many of these people had normal thyroid function.

dunatuna
Posts: 4
Joined: Apr 2011

Anyone out there have a-fib caused by the thyroid supplements (Synthroid)?  I've had a heck of a time with it and am considering the a-fib ablation, but am not sure how well it works to control a-fib caused by the medicine.  I mean, I will still have to take the Synthroid.  Anybody else have the surgery?

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network