Recurrent Hurthle Cell Carcinoma

JSK43
JSK43 Member Posts: 2
in Thyroid Cancer #1

I am a 69 year old male.  In 2008 I had a total thyroidectomy along with the removal of a 4" x 2" x 2" tumor (later determined to be a Hurthle Cell carcinoma).  I had follow up radioactive full-body scan which showed take up in the thyroid bed and in one spot on my left femur.  A heavy does of RAI (150 mc) was administered and a subsequent radioactive full-body scan revealed no bright spots (good result, I was told). 

Subsequent scans and thyroidglobulen tests have all been good....until this past October when a radioactive full-body scan and MRI both confirmed recurrent Hurthle Cell carcinoma in the form of a localized thumb-sized tumor in my old thyroid bed.

My reading on this form of cancer indicates that "take" of radioactive iodine in by Hurthle Cell cancer is "not particularly good."  I'm interested in anyone who has learned of any possible ways to improve RAI take-up so as to make post-operative full-body scans and RAI treatments more effective.

Comments

  • Jugabug
    Jugabug Member Posts: 3
    #2
    Thyroid papillary and hurthles cell carcinoma

    Hi I am just starting this journey haven't talked to any dr yet but got a copy of my biopsy which is positive for both papillary and hurthles cell carcinoma. I can give a bit if history if you want. But it will indicate at the very least if your in a small town you most defiantly have to be proactive and don't just totally agree with your drs.  

     got a copy of my thyroid nodule biopsy and it says positive for papillary carcinoma and  hurthles cell .  If it has metastisised would you still have thyroid out and based on the biopsy report would a pet scan be the next step to see if has spread before doing thyroid surgery?  If has matastisizesd what is the treatment. 

  • boitchik
    boitchik Member Posts: 10
    #3
    Jugabug said:

    Thyroid papillary and hurthles cell carcinoma

    Hi I am just starting this journey haven't talked to any dr yet but got a copy of my biopsy which is positive for both papillary and hurthles cell carcinoma. I can give a bit if history if you want. But it will indicate at the very least if your in a small town you most defiantly have to be proactive and don't just totally agree with your drs.  

     got a copy of my thyroid nodule biopsy and it says positive for papillary carcinoma and  hurthles cell .  If it has metastisised would you still have thyroid out and based on the biopsy report would a pet scan be the next step to see if has spread before doing thyroid surgery?  If has matastisizesd what is the treatment. 

    Hurthle Treatment

    RAI has successful "uptake" in a minority of cases of hurthle cell (failed in my own hurthle metastasis.) But is prescribed, I was told, in all cases.  Getting TSH way down with levothyroxin (synthroid) following thyroid removal was my process as recommended by leading cancer center. It assists growth retardation. Get the best surgeon you can, assuming that is the way it goes. Recovery from the surgery is usually quick and adaptation to the synthetic hormone should be fine. All this is my own experience with metastasized HC (lungs) and two and a half years later I am doing masters swim workouts and feel fine. But in metastasis scenario scans are done every six months to check growth rate.

    You can try reasonable 'alternative' things like acupuncture and nutrition: I take turmeric, ashwagandha and 'immunity' mushroom tabs. My acupuncturist is remarkable at detecting tension, tiredness etc from tongue and pulse examination so perhaps her treatment contributes !! Who knows ?

  • fivefold
    fivefold Member Posts: 1
    #4
    increasing RAI uptake
    Also a post TT HCC survivor with indications of recurrence. The only thing I have ever heard of to increase the possiblity of uptake is to go on a low iodine diet prior to treatment. I have no idea if it really works, since HCC is notorious for being RAI resistant. My previous endo retired, but he did not think that low iodine was very important. He did say that the fewer RAI tests that were done the better because he felt they would increase the likelihood of resistance later. I have read that directed radiation beam therapy has been somewhat successful in cases of RAI resistance.
    I go in for my first full body scan in 5 years on Friday 2/8. It was supposed to be just the 5 year marker, but my TSH and Tg suddenly spiked after 5 years of perfection.
    Please keep us posted on your results! I wish you well.
  • janettelavon
    janettelavon Member Posts: 7
    #5
    fivefold said:

    increasing RAI uptake
    Also a post TT HCC survivor with indications of recurrence. The only thing I have ever heard of to increase the possiblity of uptake is to go on a low iodine diet prior to treatment. I have no idea if it really works, since HCC is notorious for being RAI resistant. My previous endo retired, but he did not think that low iodine was very important. He did say that the fewer RAI tests that were done the better because he felt they would increase the likelihood of resistance later. I have read that directed radiation beam therapy has been somewhat successful in cases of RAI resistance.
    I go in for my first full body scan in 5 years on Friday 2/8. It was supposed to be just the 5 year marker, but my TSH and Tg suddenly spiked after 5 years of perfection.
    Please keep us posted on your results! I wish you well.

    To Fivefold
    Hi, I'm new to

    To Fivefold

    Hi, I'm new to this. I've had hurthle cell cancer, a year ago December. I was just wondering how your full body scan turned out and if you are ok.

Discussion Boards