Hurthle Cell Carcinoma

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  • dhunt64817
    dhunt64817 Member Posts: 16

    post-op
    At my post-op visit, the surgeon reported no cancer in the left lobe. He removed an enlarged parathyroid gland; no lymph nodes. No invasion to blood vessels. Sounds good so far; still waiting to hear from the endocrinologist for a follow-up appointment and the next step. I'm still feeling quite sluggish after the surgery; or maybe it's the cytomel.

    no cancer in left lobe

        I have had a very similar case. I found a 4cm in my right thyroid. They removed it and it was cancer. They then removed my left lobe andd no cancer was foiund.

    Can you tell how you are today and what treatments you had following surgery.  Dave

  • dhunt64817
    dhunt64817 Member Posts: 16

    The nodule of the right lobe
    The nodule of the right lobe was 4.5 cm - pretty large. The surgeon said he found no cancer in the left lobe (second surgery) and it hadn't spread to the blood vessels. I, too, was in shock when I got the diagnosis from the surgeon at the post-op from the first surgery. No risk factors, no family history. And the fine needle aspiration and first surgery showed nothing.

    Off to the endocrinologist tomorrow to see what he has to say. Getting my questions prepared. This site and ThyCa.org are good sources of what to ask.

    Take care.

    Pat

    update on treatment

    i have a very similafr case. Can you tell what post operation treatment you had?

  • dhunt64817
    dhunt64817 Member Posts: 16

    The nodule of the right lobe
    The nodule of the right lobe was 4.5 cm - pretty large. The surgeon said he found no cancer in the left lobe (second surgery) and it hadn't spread to the blood vessels. I, too, was in shock when I got the diagnosis from the surgeon at the post-op from the first surgery. No risk factors, no family history. And the fine needle aspiration and first surgery showed nothing.

    Off to the endocrinologist tomorrow to see what he has to say. Getting my questions prepared. This site and ThyCa.org are good sources of what to ask.

    Take care.

    Pat

    update on treatment

    i have a very similar case. Can you tell what post operation treatment you had?

  • nessie421
    nessie421 Member Posts: 1
    smerth said:

    Thanks for the link
    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.

    Just got diagnosed with Hurthle cell cancer

    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
    Jane16131 Member Posts: 5
    nessie421 said:

    Just got diagnosed with Hurthle cell cancer

    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

    Hurthle Cell Carcinoma

    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
    Shunterrn Member Posts: 1
    nessie421 said:

    Just got diagnosed with Hurthle cell cancer

    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

    Hurthle cell

    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
    mhc4165 Member Posts: 46
    Shunterrn said:

    Hurthle cell

    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

    Most benign nodules grow

    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.

  • diana500blue
    diana500blue Member Posts: 2

    hurthle cell cancer
    I also have hurthle cell cancer and had a total thyroidectomy on 7/30. I feel good as far as the surgery went- no problems there. Now I will go for the radioactive iodine in six weeks. Has anyone done that? What were the results with the hurthle cell cancer- I mean, how well did the thyroid cells respond to treatment? I actually had my thyroid completely removed (due to hurthle cell adenomas) before I found out it was actually cancer. YESTERDAY is when I got the results. I am still in shock and my mind is running a mile a minute.

    Hurthle Cell Cancer

    Hurthle cell cancer does not respond well to RAI!!!  you might ask your oncologist about other options.

  • vixin
    vixin Member Posts: 1

    Hurthle Cell Cancer

    Hurthle cell cancer does not respond well to RAI!!!  you might ask your oncologist about other options.

    hurthle cell

    I have had total thyroidectomy, lymph gland and 2 parathyroid removed. I have had 131 and have seen oncologist once. 

    I have follicular hurthle and have very little if any support, which surprises me as it is a new cancer unit and a teaching hospital.  I have taken since may to get my calcium balanced and am taking enough for an elephant together with alphacalcidol.  GP and hospital agree on nothing. 

    I am getting nervous now because,I hope, I am due next scan in a few weeks.  I am hoping, but not expecting because of it being this varient, that it will have gone.  If it hasn't, then what? 

    I was in isolation for four days.  AndI have not been given access to an Endo which seems to make no sense. 

    Just to add to the joy of it all,I have had pe's and dvt and i am on warferin for life.  

    Also hadBasel cell skin cancer.   will RAI increase risk?

     

  • dunatuna
    dunatuna Member Posts: 4
    a-fib from thyroid supplement

    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?

  • lbird
    lbird Member Posts: 1

    Hurthle Dx September 2006
    Hello all

    I have just joined the group but am so happy to report that I am cancer free at the time! I am 28 years old and was diagnosed when I was about 20 weeks pregnant with my daughter (who is healthy as she can be)! I underwent a partial thyroidectomy at 18 weeks, found out it was Hurthle Cell, was able to carry Sophia to term and went in for the total thyroidectomy about a month after delivering Sophia. I was treated in August 2007 with Radioactive Iodine, which showed an uptake in the thyroid bed and I was put into isolation and given the full dose of RAI. I can say that the worst part of my treatment was the low-iodine diet. Isolation for 24 hours was difficult, but I made it through just fine and with a better appreciation for what I have in life. Six months later, I was treated with a tracer dose of RAI, followed by full body scans and luckily, those scans came back clean. This past April, my endo approved for me to take the Thyrogen injections as opposed to going hypo while prepping for treatment. I still had to follow the low-iodine diet, but atleast my body was not hypo and worn down from not have my meds. The results from those scans also came back clean! I am now on a two year break from treatment!!!

    I am so thrilled to report that I am now pregnant with my second child, a little boy, who will be with us in January 2010. Cancer is by far the scariest battle I've fought. It's filled with ups and downs and just not knowing what havoc may be going on inside your body. I know, it's hard. BUT life goes on and you learn to deal with it the best you can. I still have days when I think it could come back...and it could. But I refuse to live my life wondering "what if". The best advice I have is to get a good endo...one that knows his stuff and one that is compassionate to your specific situation. I can say with 100% certainty that I have the best endo in the world...I would argue with anyone. He saved my life and has given me back the reassurance and confidence in my body that I lost. My life will never be the same but I'm grateful for that.

    If anyone has any questions about my story, just let me know. I was so lost when I was diagnosed, this is such a great support site.

    hurthle cell cancer

    just found out that my father has this cancer and we are looking for a good physician. Can you please tell me the endo/physician that you have and who did the surgery and where he/she is located at. thanks

  • webteach51
    webteach51 Member Posts: 10

    hurthle cell cancer
    I also have hurthle cell cancer and had a total thyroidectomy on 7/30. I feel good as far as the surgery went- no problems there. Now I will go for the radioactive iodine in six weeks. Has anyone done that? What were the results with the hurthle cell cancer- I mean, how well did the thyroid cells respond to treatment? I actually had my thyroid completely removed (due to hurthle cell adenomas) before I found out it was actually cancer. YESTERDAY is when I got the results. I am still in shock and my mind is running a mile a minute.

    newly diagnosed Hurthle Cell Cancer Patient

    Having difficulty finding anyone who is currently on this site with Hurthle Cell Cancer and was wondering how you are doing and anything I need to know about this journey?

    Thanks,

    Sue

  • webteach51
    webteach51 Member Posts: 10
    KCA12 said:

    Hurthle cell had already metastasized
    I guess I did this backward. Diagnosed with malignant bone tumor, had it removed, then learned it was from Hurthle cell thyroid cancer. Had thyroid removed. Does this sound familiar to anyone else? What happens next? I can't find any references to a similar case anywhere. Thanks, in advance, for any knowledge, help or insight!

    quick question about your Hurthle Cel

    When you had your bone removed and found out it was from Hurthle Cell Thyroid Cancer, how big were your turmors in your thyroid?

  • bclisa
    bclisa Member Posts: 1
    edited June 2019 #295

    newly diagnosed Hurthle Cell Cancer Patient

    Having difficulty finding anyone who is currently on this site with Hurthle Cell Cancer and was wondering how you are doing and anything I need to know about this journey?

    Thanks,

    Sue

    Hello Sue,

    Hello Sue,

    I had hurthle cell carcinoma in 2014.  I have been through the entire treatment from start to finish.  As of today, I am still cancer free without a trace of Thyroglobulin, which is what the goal is.  If you have any questions, please feel free to let me know.

  • rich67
    rich67 Member Posts: 1 *

    I was diagnosed with HCC in 2019. Had a total thyroidectomy and it was discovered it had attached to most of the structures in my neck. Lost one paralarangeyal nerve and some parathyroid glands in the surgery as well as some lymph nodes. Went through RAI treatment and then focused beam radiation for a couple months. Was given a very positive prognosis by my endocrinologist, and then…they found some nodules in my lungs that lit up on the CT and PET. I went to the oncologist who wanted to put me on chemo. I started researching alternative methods after seeing all the side effects. Went to a clinic and had an Oncotrace test done, and I am on numerous supplements and have altered my diet radically. Juicing two times a day and went vegan. I guess I’m one of those who doesn’t believe in traditional therapy. I’d have to say I feel amazingly good every day on this new plan. I may not be doing myself any favors, but I wanted to enjoy quality of life over quantity. In hindsight I would have just done the thyroidectomy, and then had a thoracic surgeon remove some of my lymph nodes in the mediastinal area. I feel somewhat betrayed by the hospital I went to, as they initially told me chemo is not an option for hurtle cell carcinoma, then they want me to take chemo. Huh. Go figure. That was the catalyst that pushed my down the nutritional and exercise plan. I plan on having a scan in a year to see if I am heading in the right direction. At that time, I’ll reevaluate my position if need be. For now, I’m feeling great, healthy, and getting plenty of exercise. Wish everyone here the best; don’t be desperate to fall for the poisons they want you to take. Some of them make you worse. I have significant skin problems because of the radiation and other treatments. Can’t imagine what may happen to me if I take the other stuff they want me to take.