Mar 03, 2011 - 8:10 pm
I am a 22 yo female recently diagnosed with metastatic papillary carcinoma. I has a TT and lymph node dissection at the beginning of january (two incisions), and 17 of the 20 lymph nodes they removed tested positive for tumor. The tumor on my thyroid was pretty small and not really palpable.
My PCP discovered this during an annual physical and told me to get an ultrasound after she felt a swollen lymph node on the right side of my neck. I had a CT with contrast and ultrasound at my local hospital, both of which were inconclusive to the doctors there. I was told it would be "exceedingly rare" for someone my age to have thyroid cancer but the ER doc suggested I make an appointment with an ENT for a biopsy.
I never got the biopsy. At that point I sent the scans to my oncologist (I am a childhood cancer survivor of Stage IV Wilms tumor as well, surgery to remove my right kidney, 15 mo chemo and 2 wks abdominal radiation) so she could take a look. Sure enough, I got the call saying I had thyroid cancer a few days later.
I've healed pretty well from surgery except for some numbness in the area which I've been told might not go away. I'm no longer on calcium anymore. I'm still extra fatigued which doesn't make sense to me since I thought being on synthroid makes you somewhat hyperthyroid. Now I'm waiting to get the all clear to start withdrawal, and the diet and RAI. Because of the CT scan, my iodine level was really high. I've been told I may not get RAI until as late as may.
I'm a graduate student and this diagnosis required me to switch graduate programs, move back home, and currently I'm not working. The hardest thing for me is keeping my life on hold. The treatment doesn't scare me that much, given my prior experience with cancer. Still, I am concerned by the recurrence rate which I'm reading is 15-30%. Is that high relative to other cancers?
I'm wondering if anyone has a similar story/diagnosis and is a little farther out than I am now. Are you still fatigued? Has the cancer recurred? Any advice/things you would do differently at this stage? Questions I should be asking my endo to fill in the blanks? I hate how doctors only tell you little bits of info at a time.