Cancer's back, alternative treatment to going off synthroid?

[hawkfan]

HELP!  I'm desperate!  I am so angry right now!
1 year ago I was diagnosed with papillary and follicular cancer.  I had a TT and RAI ablation.  Last week I did the thyrogen injection and the small dose of RAI for a body scan.  Well, either the cancer never went away last year or it is back.  My doc wants me to go off my synthroid ASAP to do the RAI ablation again and I am refusing.  I want to know if there are alternative treatments such as external radiation or chemo.  It has taken me a year to get my synthroid dosage correct and TSH levels good and I am finally feeling like myself again.  I have 2 small children and am not a great parent when my levels are off.  I want to know if I can do ANYTHING else besides going off my meds!  For anyone without a thyroid you understand my anger to this option.  I have to believe there is another way.  PLEASE HELP ME!

[smb60]

A related discussion, side effects was started.

[Mark Lupo, M.D.]

You could repeat the thyrogen 2 days in a row, then get I-131 re-treatment -- this is not FDA approved for this indication, but used by many university centers.  Would not recommend external radiation this early on, as I-131 is safer and likely equally effective. There is no role for chemo.  

Would also consider neck ultrasound to get an idea of why there is uptake -- ie, lymph nodes vs thyroid remnant not completely ablated last year.  Also ask what the Tg level was -- if high (esp >5) then repeat I-131 may make sense.

Also key to follow low Iodine diet for at least 2 weeks prior to repeat dose.

[RA1]

After surgery, right you have to be monitored and going for check ups. I just got my Throax CT and the results came back normal. Next week will take my other tests and I'm sure they will be ok also, but yes you are right you have to be monitored for precautions. Although, my doctors told me I was very lucky my right lobe was 22 mm and left was 12 mm, and he tooked out both of the glands. So, he told me I am cancer free. Now just gettling the tests and to see if I need to take the pill.

[RA1]

Yours is the body scan treatment where you lay on the table I presume. The shot I don't know about. Mine will be the RAI with the pill to take, it will depend on the tests that is. What did your doctor say about your problem then? Lets us keep update. Hopefully you will be ok.

[hawkfan]

Thanks for your quick response.  The problem is that I did thyrogen shots last week for the low dose of RAI treatment for the body scan, but for the ablation (which is the high dose to kill remaining cells)  they won't do thyrogen.  I don't want to be fighting my doctor, but at the same time, I do not want to go off my synthroid.  I am also only 28 and with 2 small kids it is so hard.  Plus it seriously took like a full year to finally feel "normal" again.  I don't want to waist another year.

[RA1]

Well I hope you will be fine. I had TT for papillary carcinoma 2 weeks ago and the surgeon took all of it out. Now I'm getting my tests and going to see the RA doctor to see what he is going to do. What I don't get is how can you're cancer be back if you had a TT? If it was partial I would understand. Well keeps up updated.

[lawteddy]

I had a TT im March 2007 for pap carc.  My case was a little unusual because my nodule was only .07 at its greatest diameter but it had already spread to 1 out of the 9 lymph nodes that my ENT took out along with my thyroid.  I spoke to a specialist in Canada and he told me about a study that was done that showed doing RAI immediately (6 weeks) after a TT for the sole purpose of ablating any remaining thyroid tissue did not reduce the chances of reoccurance.  I asked my Endo about this study because the usual coarse of treatment for people like me is RAI to ablate even without evidence of and remaning or metastatic cancer in the body and I too have 2 small kids so I don't want to expose them or myself to unnecessary radiation.    He took my thyroglobulin level and it was 3.6 so he said I can postpone the RAI for now and carefully monitor me through blood, ultrasounds and a PET scan.  The other reason is I am onlt 32 and not through having kids and new studies are showing that RAI can cause premature menopause.  Now, as to your question regarding going off meds because you are now in a position where you have no choice but to do RAI. If I were to do the RAI, my endo was going to allow me to do Thyrogen shots instead of going off synthroid - I have 2 small kids and negotiate contracts so I can't afford to give up my energy for 6 weeks.  

[Amanda7980]

Thyroid cancer can return in minute amounts of cells anywhere in the body.  They are still thyroid cancer cells, but can go to lungs, etc.  That is why we thyca survivors have to monitor closely forever.