Recurring Thyroid Cancer

CsJewel Member Posts: 1
edited March 2014 in Thyroid Cancer #1
Hi All!
I'm new to this site and am thrilled to have found it. I've recently been diagnosed as having recurrent thyroid cancer due to an uptake with a body scan. I was diagnosed with papillary carcinoma in 1993, had a total thyroidectomy and some lymph nodes removed that year, then followed with 2 radiation ablations. I had a clear scan (or close enough..less than 1% the Dr. said) in 1994.

Ok..enough of history, huh? So, I'm now getting ready to have another dose of radiation. The Dr. has not ordered any other tests at this time. I think I'm to have some kind of scan after this radiation. Anybody else going thru this, or have went thru this? I really need a lil encouragement, or to find someone else that has some info. as my Dr. is not the most info. releasing kind. lol

Thank you!!
CsJewel~~~ :-)


  • bonnieblink
    bonnieblink Member Posts: 2
    I'm new to this site too, and have also found Thyca and adv-thyca Yahoo Groups to be very informative.

    I have recently discovered I have a recurrance that has probably been going on a very long time. I was first diagnosed in 1970, had my thyroid gland removed finally in 1975 and thought after RAI in 1976 I was all clear.

    None of my doctors ever ordered another whole body scan after 1976.

    Now both lungs are full of thyroid cancer and my neck and one lymph node. I too am looking for answers.

    If you want to email me privately, please feel free.


    [email protected]
    [email protected]
  • Cyn_Tia
    Cyn_Tia Member Posts: 1
    Wow CS - sorry to hear about it. I originally had papillary/follicular combo in 90 and they thought it reared up again in 92 and did more surgery at that point. I have had about 10 endocrinologists - they moved or I did - and I wouldn't put up with a doctor like the one you have for a minute. Being involved in your treatment was how I believe I've overcome cancer. I am here to tell you that I understand my own feelings regarding the situation and I am quite certain you can talk with your doctor about how you want to partner in learning and understanding your situation and care program - if he doesn't respond well to that, ask him for a referral to someone who will that he respects. In order to radiate you, you'd have to be on thyca or off your thyroid meds - so I would guess that's the radiation - while you are on thyca they might or will order a scan, whole body or otherwise, they may as well since they have you off levothyroxine.

    I'm wondering if you've been taking a high dose of thyroid med since 94. One that makes your tsh lower than .03 and optimally .01. I've been chemically hyperthyroid since the second surgery and have clear scans and tests, including ultra sounds every year.

    I've read that suppressing the thyroid tissue eliminates most risk for thyroid cancer returns - it's a very specific type of cancer and can only live in the thyroid tissue that is in brains/bone/lung and thyroid. If you chemically and completely suppress that tissue, the cancer has no home and stays away. Anyway - feel free to contact me at [email protected] if you want to talk or have me help you find other answers. I'm available to you. Blessings, Cyn
  • brianjw
    brianjw Member Posts: 9
    Had papillary 26 years ago. Was lucky. No recurrance although it can happen and can be retreated with I-131. Doesn't take more than a cell or two that survived first ablation somewhere to get a new tumor going. You have a right to get information from your doctor or the treating hospital. Don't be shy about it, it's your head and your peace of mind. Don't compromise. I recall it was important to be off synthroid for 1 month prior to I-131 and to get TSH to stimulate the surviving thyroid cells prior to ablation. Had a second ablation year 2 because they missed the 1-month synthroid starvation prior to ablation and needed to be sure. Check and read treatment protocol to make sure it is followed. You have to participate in your treatment plan. I am dealing with a new cancer these days and I debate my doctors and am equally or better-informed than many of them. It makes a difference. The internet can give you a real edge. Good luck. Write anytime.