Hurthle Cell Carcinoma

First of all I am so glad to find this site. I had a TT in September 2006. the biopsy results were one mass was HCC another smaller mass was folicular cancer. The surgeon was confident he got the entire thyroid and told me there was no need to see an oncologist and that my primary care dr. could handle my follow up. I was put on levo and had a body scan 6 months later which came back fine. In 2008 I was eventually referred to an endo, whom I see every 6 months for blood tests and a thyroid ultrasound. They have all come back normal.

In February 2010 I noticed a lump on my throat. My dr. thought it was a cyst, but ordered an ultrasound. The results of it were inconclusive so I was referred to a surgeon, who removed the lump (which had enlarged during the 2 months since I found it). It came back as HCC. Now I am waiting for an appointment with an oncologist.

I am wondering what to expect next. Any insight will be appreciated.

samanjan said:

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

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

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

loispol1 said:

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

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

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

loispol1 said:

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

Lois

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

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

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

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

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

loispol1 said:

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

Thanks again for your help! Lois

Hi Lois.

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

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

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

Good Luck!!!

weberdns said:

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

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

samanjan said:

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

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

FCT2010 said:

Hi Lois.

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

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

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

Good Luck!!!

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

samanjan said:

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

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

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

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

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

loispol1 said:

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

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

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

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

new
Hello everyone -

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

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

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

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

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

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