CSN Login
Members Online: 10

Does anyone have Hurthle Cell Carcinoma diagnosis?

Lola48
Posts: 16
Joined: Aug 2009

Hi there:

I'm trying to talk with anyone who might have Hurthle Cell Carcinoma. It's a rare thyroid cancer and I would like to find someone to share info and experience.

Thanks

pfmerriell
Posts: 22
Joined: Jul 2009

I was diagnosed with Hurthle Cell in July. I have had two surgeries to remove my thyroid and am now in the prep phase for the radioactive iodine scans and treatment. I ceased the thyroid replacement last week (cytomel) and started the low iodine diet today. Since I stopped my meds, I feel okay so far - just a little more tired. I begin the treatment Sep 8.

Lola48
Posts: 16
Joined: Aug 2009

I was diagnosed back in Jan. 2008, and had complete thyroidectomy on Feb 14, 2008. I was told whenever the Drs. see Hurthle cell, they don't know for sure until thyroid removal whether it's malignant. What are/were your symmptoms?

The diet is hard the first time around but I have lots of good tips and ideas for when you are starving an needin a quick fix.

I stayed on my thryoid med and had the thyrogen shots--did they mention that to you?

pfmerriell
Posts: 22
Joined: Jul 2009

Other than the nodule on my neck, which my primary care doc found last fall, I had no symptoms. The initial ultra sound showed a "cold" nodule, but the fine needle aspiration didn't show anything. Now we know that the cancer wasn't able to be diagnosed until after the thyroid was removed. The right side nodule tested positive for Hurthle Cell; they found no cancer in the left lobe when that was removed in the second surgery. And my thyroid levels were always within the normal range.

My endocrinologist indicated going off the meds and the diet are his preferred prep for the RAI. I was on cytomel right from surgery, so it was easier to stop - goes out of your system faster.

I'm not having too much trouble with the diet so far; luckily it's summer and fresh fruits and veggies are easy to come by. The hardest thing is getting back to cooking and taking the time to prepare food rather than just grabbing something pre-made.

BellsAngel69
Posts: 102
Joined: Dec 2009

What? Who told you they don't know for sure if Hurthle cell is malignant until a thyroidectomy? HELLO!! Hurthle Cell is a form of Thyroid cancer. It's not goiter. Goiter is non-malignant. Wow, I'd get another doctor if your's is telling you Hurthle Cell might not be malignant.

And yeah the diet is hard the first time around, but for me, it's only gotten worse every time after. I think it totally sucks. I can't get good veggies or fruits this time of year where I live. I'm in hell right now. I'm on the diet and awaiting another PET and a low-iodine scan. Sorry, but they sugar coat it, saying it's not bad, so many things to eat. NOT!! More like you can barely eat anything, and have to prepare and cook and buy thing's you'd never normally have on hand just to try to make your food taste good.

I hope I'm not offending anyone, but the diet sucks. Three weeks for me and I'm only on day five. It's especially hard in the winter. I'm so hungry, all the time. Nothing fills me up, nothing tastes good, nothing satisfies. Just salad after salad after salad. I can't stand it, I really can't.

Anyone else have a hard time with the diet?

thurston
Posts: 4
Joined: Apr 2010

I am from Australia my name is Peter and i am a little confused with this diet talk. i was diagnosed in 2000 with hurthle cell carinoma and since then have had both thyroids out and half of my voice box out. I have been on thyroid replacement meds - thyrogen- for years now and have no problems with food like what you and others are talking about.

weberdns
Posts: 156
Joined: Mar 2010

You only need to follow it for a couple of weeks before radioactive iodine treatment then you can go off of it! It isn't a diet for life!

cheryl21
Posts: 3
Joined: Oct 2010

http://www.endocrineweb.com/conditions/thyroid-cancer/hurthle-cell-thyroid-tumor

This is a very good website that shows that hurthle cells are not always cancerous. I'm sorry you are having such a hard time. Perhaps a more positive attitude would help? You are young and alive and the diet is temporary :)

emma54
Posts: 59
Joined: Aug 2009

Make sure you rest! And good luck to both of you.

Lola48
Posts: 16
Joined: Aug 2009

Thanks Emma!

Mellz
Posts: 5
Joined: Aug 2009

Hi
I was diagnosed with HCC about a year ago and underwent total thyroid removal and radioactive iodine treatment. My bloods have gone a little haywire at the moment so am about to have a PET scan as they think it has spread. I was not aware that the whole body scan only picks up if you have hurtle cell still in thyroid not that you have hurthle cell anywhere else. I guess my point is please insist on a PET scan as this is really a good way to baseline and then monitor, as well as your bloods.

pfmerriell
Posts: 22
Joined: Jul 2009

Thanks for the tip about the PET scan. I'll be sure to ask about that.

jules123's picture
jules123
Posts: 2
Joined: Sep 2009

Hi, I'm new to the site. I have had a thyroid goitre for four years and at the time had two needle biopsies which came back clear. Recently I had trouble with the goitre as it was pressing on my windpipe while I was trying to sleep. I had a left lobe thyroidectomy and the results were that I had Follicular Thyroid Cancer (hurthle cell) invasive. At the time I didn't ask any questions as I was trying to take it all in. I have now had the other lobe removed and am awaiting results. It would be great to share experience with you.

thanks

mainstreet39154
Posts: 8
Joined: Oct 2009

I was diagnosed with HCC in April this year. It takes awhile to get used to the idea. Most of the time I don't think much about it, but some days it weighs heavily on me. I am awaiting an appointment at MD Anderson for 2nd opinion. I have a great local endo. Mine was large (4.7 cm) with vascular and capsular invasion. So far it's been a pretty smooth ride but because it is rare and I am 41 years old, we agreed a 2nd opinion may be in order. I have researched and continue to research and read up on it. Be careful about reading message boards. I have to remind myself it is just people posting their personal experiences and not typically medical professionals. Let me know if I can lend any info I have found. Good luck on your journey. Where are you being treated?

jules123's picture
jules123
Posts: 2
Joined: Sep 2009

Hi mainstreet, I live in England and have had my operation at Castle hill hospital, Hull. When I go back to the clinic next week I should find out when I will be having my radioactive iodine treatment.
Speak to you soon.

burty
Posts: 1
Joined: Feb 2010

Hello Jules

Someone recommended this site to me so I thought I would take a look, I came across your post and could not believe that you are been treated for HCC at Castle Hill Hosp Cottingham this is the hospital I received my treatment at for HCC in 2008, what is the chances of been on an American site and finding someone else from England been treated for this extremely rare form of thyroid cancer at the same hospital as yourself!!!
I had my thyroid removed June 08 and completion Aug 08 with RAI Oct 08 at the new cancer care building, had a clean scan in April 09 and am just waiting for the results of my bloods taken at the beg of Jan. I am under the care of Mr England what about you?

Best Wishes
Jane

sfl67
Posts: 55
Joined: Nov 2009

I was diagnosed in July 09 after total thyroidectomy; my tumor was 3.5cm and I am a 59 year old female. I had the I-131 in September, was given 125 mcg's Synthroid after total body scan. My TSH levels are 1. and I have no idea if that is where they should be. I am scheduled to see my endo next week, first appointment since procedure. I live in a rural area, my doctors are about 100 miles away. Any information you could share about your experience would be greatly appreciated. I have done a great deal of reading online, but nothing compares to actual knowledge and experience. I have a considerable amount of pain in the right side of my neck, this is the side of the tumor; the left lobe had no sign of malignancy. My surgeon did a modified throat dissection at time of surgery, I'm not sure if the pain I have is due to scar tissue, inflamation or other issues. The tumor was deeply embedded in my throat was also attached to my trachea, so I keep a scratchy throat. I would appreciate hearing about your experience. Thank you

wlangley
Posts: 9
Joined: Nov 2009

There is more information in this Discussion Board

http://csn.cancer.org/node/171280

BellsAngel69
Posts: 102
Joined: Dec 2009

In Dec. 2003 I found a lump in my neck under my collar bone, purely by chance. It was an enlarged lymph node and I had it removed. I was then diagnosed with Thyroid cancer. I had a total thyroidectomy, then the RAI treatment. For the next two years I did the low iodine diet and uptake scan, and I was clean. The following year my doctor let me skip the scan because my TSH levels had been undetectable. I saw my doctor every six months and had blood tests the whole time and had been fine. Six months after skipping the scan I went for blood tests and my TSH levels were rising. They put me on the diet and did another scan. Not even five minutes after I left, they called me on my cell to ask if I could come back. They wanted to do something else. I was thinking, what the hell? I went back and they did another scan. When the results came back, it showed uptake in my left posterior hip. Next, I had another RAI treatment in the hospital to take care of the reoccurence. After, I had another scan and it showed I was clean. Six months later, I had another blood test and my TSH levels were even higher, so they ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't absorb into the bone, so it was ineffective. I had surgery a few months later to remove the dime sized spot on my bone. Post surgery, my TSH levels hadn't changed, but they weren't concerned. Six months later, my blood tests showed my TSH levels were even higher so I had another PET scan. It was clean and they sent me on my merry way. I just had another blood test in Nov., and after three weeks my doctor called to tell me my TSH level were FOUR TIMES higher than before, in only six months. I totally freaked out. The PET scan showed nothing but my TSH levels are jacked way up. Now, I'm on the low idodine diet yet again, and they are going to do both a PET scan and and low-dose RAI scan to see if anything shows.

Truthfully, I won't be convinced this time if the scan is clean. I'm going to seek out another doctor for another opinion. I don't care where I have to go, or what tests I have to have done, I won't be satisfied. My TSH level is 121. Back in May it was 29. When my level first started to rise, it went from 2, to 4, then 9. My doctor didn't even tell me my TSH was elevating until it went up to 9. I felt betrayed and told him that I had the right to know. He said it wasn't that high so he wasn't too concerned. The bottom line is it should be zero and when it was rising he didn't tell me. Post surgery my level was 15, then 29, now it's 121. So if the scan says I'm clean, I'm not going to believe it.

I'm very frustrated, but have kept upbeat this entire time. I admit, I've had my bad moments, but I'm not going to let this beat me. The hardest part is the initial diagnosis was so promising, and here I find myself with my second reoccurence in two years, and it just makes me so angry. They paint this rosey picture. They told me thyroid cancer is 99% curable and very treatable, yet I find myself in this situation.

I'm 49, I was 43 when diagnosed. I have an 18 year old daughter in college and a 16 year old son in high school. I plan to live a long, happy life, long enough to be a pain in the butt to my kids. Hey, what goes around, comes around, you know?

I just hate the waiting part, and there is always a seed of doubt in the back of my mind. Is it gone, or still there, lurking, waiting to rear it's ugly head again?

It's hard, but I'm so happy I've found this place for support. I'm sure it will make all the difference in the world.

No matter what your doctors say, don't settle for an answer. If you're not happy with what they're telling you, get a second opinion or as many as you need until your satisfied.

Hurthle Cell cancer is a very tricky disease. It can come back, so you should always follow through with tests, and don't ever think it's totally gone, because chances are somewhere down the line it will come back. It's just a matter of when and where. I'm not trying to be pessimistic, but it't the truth.

‹ wondering if anyone had symptoms prior to diagnosis Thyroid Cancer Recurrence ›

samanjan
Posts: 40
Joined: Dec 2009

I found two medical texts on Amazon which, while not for the lay person, were very informative. They are "heavy" reading, but most of us have already educated ourselves about RAI, thyroglobulin levels, TSH, rhTSH,etc., so it made the digestion of material much simpler.
I also found two of my main physicians listed in one of the studies!

The books are, Management of Thyroid Cancer and Related Nodular Disease, by MCDougall, and Essentials of Thyroid Cancer Management, by Amdur and Mazzaferri. I found the first through this website from another person with HCC and the second I ordered and found even more informative.
As I said, these are for the medical profession, but quite full of info.

BellsAngel69
Posts: 102
Joined: Dec 2009

You are my guardian angel right now!

saml1992
Posts: 4
Joined: Jan 2010

hey i am 17 and have been diagnosed with hurtle cell cancer in my thyroid i am currently in preparation for my radio iodine treatment and have started my low iodine diet.

any tips anyone?

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

Have you had your thyroid removed?

saml1992
Posts: 4
Joined: Jan 2010

yeah i have had a full thyroidectomy i was just wandering in there were any tips on diet lol im finding it hard

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

i used the iodine free salt, which made it pretty easy. I just had to cook a lot for myself, but i am a mom so i do that anyway...I also carried a shaker of it with me for going out. Most restaurants use non-iodized salt in cooking but have iodized salt on the tables. So i would ask to see the salt package used for cooking the food and if it was non-iodized then i could eat there...That is what i did, and when they tested me i was golden on the iodine levels so it worked out fine...hope that helps!

saml1992
Posts: 4
Joined: Jan 2010

thanks for the advise i didnt check it until i had finished just got out of treatment but thank you anyway :)

cheryl21
Posts: 3
Joined: Oct 2010

Goodness knows.........I had no idea you've been through so much. Please accept my apology .

nursemate2
Posts: 1
Joined: Apr 2010

I am an 50 year female who will be having a removal of a left lobe thyroid Hurtle cell lession on 4/26/10. My Hurtle cell was Dx: by Pet Scan, ulta sound , and Fine needle asperation Bx. Because of the rareity and the fact that I have many medical problems . My doctors have desided to take the left lobe of my thyroid out and see what the Bx says. I am a nurse and my step father is a doctor. We have been doing lots of reading over the past month and I feel comfortable with plan. I will keep and touch and let everone know how it turns out.

loispol1
Posts: 84
Joined: Feb 2010

I am in a similar situation as you. I was scheduled for TT last Friday but became to ill for surgery. I have a lot of other medical problems, so surgery will be hard for me. I am currently going to have a MRA before surgery, to rule out a possible portal vein blood clot that showed up on ultrasound when I became ill last week (upper abdominal pain, sick etc.). I have read everything I could find and have printed it all out and my house as these stacks of hurthle cell documents all around! I saw four surgeons total, but the last two addresseed the Hurthle cell neoplasm found on FNA in February. That nodule is smaller. I have over 8 nodules throughout my thyroid and have had them since 1993-4, with only a couple of FNA in '95 & '96 before this year. I have been on a suppresion dose of thyroid medication since then which reduced their size and has kept them from growing. They were much larger in the beginning when I had a large goiter. I have to wonder what has really been going on in my thyroid from '96 until now, with only sporadic ultrasounds. One of the nodules is a new in that is larger & visable & showed up in Dec. just below my adamas apple. FNA said that one was beign but they found another that was hurthle cell while they were doing the FNA. We will see! You are lucky to be in the medical field and have a close realative who is a doctor. I can comprehend everything I read but I really do not understand the body, or even know where half of my organs are located! Welcome to our group here, great information and support here for "hurthle cell". Lois

weberdns
Posts: 156
Joined: Mar 2010

I am a 49 year old (50 in December) nurse diagnosed with Hurthle Call Cancer on the left side. I had no disease on teh right and 1 lymph node affected on the left! Welcome to the group and glad to have you with us under the circumstances! Would love to hear how it turns out and how life is for you!

cheryl21
Posts: 3
Joined: Oct 2010

sorry....posted in wrong place

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