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Old 12-28-2002, 10:40 PM   #1
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Post hurthle cell cancer

i have a very rare form of thyroid cancer called hurthle cell (about 400 cases of it in the medical literature). my prognosis is pretty good, but it is a lonely feeling having such a rare disease. is there anyone out there with hurthle cell cancer?

 
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Old 04-08-2003, 02:45 PM   #2
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Hello--Don't feel lonely.
I have also had hurthle cell carcinoma. .
I was completely malpracticed on/misdiagnosed by not only my original endocrinologist, but also the path dept at my local hospital--and subesquent endocriniolgists too--The FNA samples had the Hurthle cells in them, but the docs ignored it, told me surgery was unnecessary etc etc Eventually I got different and wonderful docs.
I have done a lot of research on HCC. My surgeon is brilliant and incredibly nice--Orlo Clark in San Francicsio. I had a complete thyroidectomy in 1994 at UCSF. My tumor was the subject of an article in Thyroid magazine because it is an oddball even for HCC tumors--it was "hot" (they're usually cold)and it has a unique genetic structure--they analyzed the genetic material. You are right re there's very little in the medical literature about HCC.
I come from a small city so I had to go to San Francisco to get decent medical advice--it saved my life. --CPC

[This message has been edited by moderator2 (edited 04-08-2003).]

 
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Old 06-02-2003, 10:14 AM   #3
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I also have hurthle cell cancer. I had a total thyroidectomy this month. I've read everything about the subject I can get to on the web. Yep, it's a lonely feeling. I guess I'm lucky because mine was caught early, but the ablative radioactive iodine caught some activity in a couple of lymph nodes. So now I don't know what to think. How are you dealing with your feelings about all of this? I'm finally out of the smile on your face everything will be OK phase, and suddenly into "What? Why me..?" phase. I'm trying to mentally kick myself out of this. Suggestions?

 
Old 07-09-2003, 09:18 PM   #4
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Our daughter just found out that she needs to have a second surgery to remove the rest of her thyroid due to finding that she has hurthle cell carcinoma. She had her first surgery the later part of June 2003. The biopsy was sent to Italy for analysis by a thyroid specialist. His recommendation is that the rest of her thyroid be removed and begin radioactive iodine treatment immediately. She is 27 years old, there is no family history that we are aware regarding thyroid cancer. It is somewhat a shock to her whole family. The good news is that her younger age is in favor of a good recovery, as far as we know now.

 
Old 05-20-2004, 02:11 PM   #5
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Re: hurthle cell cancer

Hi all
I have also had hurtle cell carcinoma. Two months ago, I had two surgeries. In my first surgery, My doctor took the right lobe and the nodule out only and sent it to pathology. According to the pathology result, I had to have the second surgery, ...ctomy one week right after my first surgery.
it was so frustrating. Anyway, My concern is that My doctor told me that I don't need
Radioiodine treatment and scan after surgery. Since he told me that HCC has a decreased avidity for iodine 131. therefore, treatment with radioactive iodide has a limited efficacy. He told me so.
Instead of this treatment, He is gonna monitor a recurrence of cancer by checking my blood (the level of thyroglobulin ). if the level of thyroglobulin elevates, this means that the cancer has returned.
what kind of treatment did you guys have after surgery? Are you having frequent blood tests to monitor your level of thyroglobulin?

 
Old 05-25-2004, 11:21 AM   #6
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Re: hurthle cell cancer

Quote:
Originally Posted by suzie2005
Hi all
I have also had hurtle cell carcinoma. Two months ago, I had two surgeries. In my first surgery, My doctor took the right lobe and the nodule out only and sent it to pathology. According to the pathology result, I had to have the second surgery, ...ctomy one week right after my first surgery.
it was so frustrating. Anyway, My concern is that My doctor told me that I don't need
Radioiodine treatment and scan after surgery. Since he told me that HCC has a decreased avidity for iodine 131. therefore, treatment with radioactive iodide has a limited efficacy. He told me so.
Instead of this treatment, He is gonna monitor a recurrence of cancer by checking my blood (the level of thyroglobulin ). if the level of thyroglobulin elevates, this means that the cancer has returned.
what kind of treatment did you guys have after surgery? Are you having frequent blood tests to monitor your level of thyroglobulin?
Suzie,

I had a FNA that came up indeterminate. It stated that my nodule had slightly atypical follicle cells with hurthle cell features. It also stated that the findings are suggestiveof nodular/adenomatous goiter with Hurthle cell features, but that it could not be confirmed based on cytology alone. The differential is follicular neoplasm.

The suggestion was to consider complete excision of the lesion for histologic verification.

I am waiting to get in to see an endocrinologist on the 21st. My PCP is washing his hands of this, so I don't know his interpretation. I am so nervous right now. We also have a family history of thyroid cancer, but I am not sure what type.

Were they able to differentiate between adenoma or cancer through fine needle biopsy when you had it done? Or did they only have confirmation after surgical removal of the nodule?

Thanks.

Nervous in Nevada.

 
Old 09-02-2004, 11:06 PM   #7
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Re: hurthle cell cancer

Hi everyone, I am new to your board. I just turned 39 years old and I have pure Hurthle cell cancer of the Thyroid. I am in stage 4 (April 04) I have had 2 surgeries within 3 days of each other and a RAI treatment of 141 . My tumor was 4.5 centimeters. When they did the body scan 10 days later it only showed thyroid tissue in the thyroid area. I had a FNB in 1996 and they said it was benign. The endo told me it was a cyst and there was no reason to worry so I went to my yearly appointments and my TSH count stayed normal with Synthroid. Then when I went back Jan 04 The endo noticed that it has grew so he did an ultrasound and told me that he believed it was cancer. I went to a surgeon and he did a thyroid scan, blood work, and an ultrasound and the surgeon said that he didn't think it was cancer so they didn't schedule my surgery right away. After I had the surgery to take out the right thyroid they told me it was benign to go home and relax. I had only been home 2 hours when they called and told me I had cancer and I had to have the other side of the thyroid taken out. I was scared to death and I couldn't hardly move from the first surgery. I am a Christian and I trust in God. The endo is wanting to wait until December to do another scan. The oncologist told me that I have between 5 to 7 years to live if it doesn't spread or reoccur. I have been having problems with UTI infections ever since I had the RAI 141 treatment done. Has anyone has this same problem? Thank you for listening to my story.

 
Old 10-29-2004, 06:24 PM   #8
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Re: hurthle cell cancer

I have Hurthle Cell as well and I had a total Thyroidectomy and was treated with I-131 of 120 milli curi, I will go back in December for more blood work. But I know that Hurthle cell does not always respond to the I-131. Good Luck and keep us posted.

 
Old 12-11-2004, 07:37 AM   #9
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Cool Re: hurthle cell cancer

I too had hurthle cell carcinoma in 1997, I was 27. I had a very small nodule between the thyroid glands. I didn't have I-131, was told it would not help. My labs were normal during and after cancer.
I went to my doctor the other day with a mass in the right side of my neck x 5 weeks with no pain, normal labs including normal sed rate. I am set up with an ultrasound on monday and my doctor says depending on what that shows a PET Scan could be next.
He told me that it was not lymph nodes or glands and that the swelling goes down into my subclavicular area as well. I am very worried about this.

Last edited by mysteri2u007; 12-11-2004 at 07:45 AM.

 
Old 01-12-2005, 04:29 PM   #10
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Re: hurthle cell cancer

Hi! I am a 42 year old female just diagnosed with Hurthle from my 1/3 surgery. I had a nodule 3.5 cm. I have my completion thyroidectomy the 31rst. I was fortunate to see an endocrinologist already since many have appts three months out. I will go hypo immediately post surgery. At three weeks I will have a blood test. When blood levels are okay, I will have a tracer dose of iodine. Three days later, the doc tells me to plan to check in for iodine treatment. I may have this a second time on down the road. I had minimal vascular invasion and some capsular invasion. Any one want to comment on anything? I am interested in any relevant stories or information. Especially having hurthle...statistics really vary out there. It is also frustrating to see that so many people post once and then seem to leave the boards. I very much want to cultivate an on-line support group for Hurthle. I have only this one post but I have edited it and will continue to check back!

Last edited by libbygeo; 01-26-2005 at 02:42 AM. Reason: More info to add

 
Old 01-27-2005, 10:01 AM   #11
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Re: hurthle cell cancer

I've had a needle biopsy that showed the presence of Hurthle cells in a nodule, and so no determination was made regarding malignancy. This is being treated like a common thyroid surgery, but it is apparent to me that this may be a hurthe cell carcinoma. I've had to ask for a second opinion to get in to see an endocrinologist, but the appt. is a couple weeks away. My HMO sent me to a general surgeon to have the surgery; but I think a head and neck specialist would be a much better option, any thoughts?

Last edited by fredl; 01-27-2005 at 10:03 AM.

 
Old 01-27-2005, 06:51 PM   #12
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Re: hurthle cell cancer

Yes it could be Hurthle cell cancer.My understanding is that about 80 percent are not. My understanding is that a needle biopsy just can not tell. It is the capsular and vascular invasion that separates the cancer from the adenomas. In my understanding an adenoma is nothing to sweat about at all! In my case, they did a partial thyroidectomy and now I am having a total since it was cancer. Mine was done by an ENT. I have heard that they or an endocrinologist are the way to go. My ENT has done surgery for 3 other hurthle cell cancer cases. The things I liked about him is that he said he did this surgeries only in the morning. He talked about how they work to preserve the nerve and seemed well aware of the importance of preserving the parathyroids. Of course, now that I have to go back for surgery, I wish I would have had a total thyroidectomy...but if I would have had a hurthle adenoma that would have been overkill. My first surgery was a breeze. Felt good after a good day of sleep. So I am not bothered by them going back in. The doc does say the second surgery is harder for him because of the scar tissue and old blood etc. but will be just as easier for me. The first was easier than my c-sections, gallbladder and knee scope. I had researched the protocol for my cancer and feel my ENT is doing the right stuff. His office referred me to two ENTs at the same time and got me on their cancel list (AFTER the cancer was diagnosed). And I got in to see one before my second surgery. (Originally it was an unbearable three month wait) Now I get to go HYPO and have radioactive iodine right after surgery. (Some posters with Hurthle have said their docs won't let them do radioactive iodine because it doesn't usually uptake it. I am so glad I did not have to fight that battle because I want to do everything I can to fight this.) My ENT also did a chest scan and is talking about a whole body scan sometime which will be nice as it seems like lots of docs may just want to monitor blood levels and pay attn to symptoms. Of course, my case may be different. As I understand it, I probably would have micrometasasies if nything at this time and it is 5-10 years down the road that I would be likely to have a problem if I do...I just found out mine was hurthle cell cancer 1/7 so I have learned a lot in a short time. Another interesting thing, one of the endocrinologists that my ENT consulted with thought I should have lymph nodes removed though there is no sign of involvement. So he called out of area specialists. Since there was no sign of lymph involvement, he is going to look around but he will leave them unless he sees something...since lymph involvement is rarer with Hurthle than other types. This was only disconcerting because of course I would like all the docs to totally agree on everything. If anyone has anything to add or if I have said something wrong, please post your info! Wishing you the best! Liz

Last edited by libbygeo; 01-28-2005 at 02:39 AM.

 
Old 01-27-2005, 07:17 PM   #13
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Re: hurthle cell cancer

can anyone tell me what the symptoms are

 
Old 01-28-2005, 02:42 AM   #14
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Re: hurthle cell cancer

A lump in your neck. NeedleBiopsy would be indeterminate because Hurthle cells are not considered cancer unless there is vasular or capsular invasion. So you usually have a needle biopsy and then half of thyroid removed unless there is extensive invasion. Biopsy after surgery is what is definative.

Other symptoms are just like other nodules. You can feel pressure in your neck from the nodule displacing things....etc.

 
Old 01-31-2005, 07:29 PM   #15
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Re: hurthle cell cancer

The Needle Biopsy came back showing Hurthle cells so now I am going to an Ear Nose and Throat Surgeon. How long are you in the hospital when they remove the nodule and or Thyroid. Do you know how long I would be off work? Very curious and a little nervous after I read all the information on here. Thank you.

 
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