I recently had my whole thyroid taken out due to cancer--papillary. My surgeon sent me to an oncologist who said there was no point in me have radiation---my surgeon disagrees with that and thinks I should have radiation. I went to an endocrinologist this week who suggested radiation as well. I went through hell emotionally after the surgery and am now feeling myself, so I am concerned if I go for the radiation I am going to experience that emotional craziness again and gain a lot of weight that I cannot loose. I lost a year ago 96 pounds and do not want to gain any of it back. Has anyone had the radiation? How much weight did you gain? Did you loose it afterwards? Anyone not have the radiation and if so why not?
Oncologists are often not the optimal doctors for managing thyroid cancer---usually endocronologists, or sometimes radiation oncologists would manage your care.
First, you don't have to decide now. This is a slow growing cancer, and if it's too much for you to worry about now, you can wait a few months until you're in a better mental place to decide.
People who don't have RAI tend to have smaller nodules---for them it's more optional, those with larger ones, or a spread to lymph nodes do have RAI as a matter of treatment.
The studies on whether or not you need RAI with smaller nodules is more controversial, and the studies vary.
I gained about 2 pounds before RAI, because I went hypo for many many weeks. I have since lost it, I am on a high dose of synthroid to keep my TSH suppressed, so I don't gain a lot of weight like people who are hypo often do.
Thank you. I had several nodules--one that was cancer the others not--it was the size of 1.3 --they say the cut off is 1.5, that if it was that size or bigger the oncologist would definitely say yes to radiation.
I guess I feel the pressure of making a decision because I am wanting to get a new job and I need all this behind me so I can move on and get on a new companies insurance. Plus I just want this behind me.
Can someone become hyper rather than hypo after radiation?
Prior to taking the RAI pill they make you go "hypo" so that you uptake a great deal of radiodine and make the treatment more effective. After, my doctor keeps me a little on the "hyper" side of the scale (suppressed TSH) to prevent a recurrence.
The other benefit of having RAI is that it's much easier to monitor for a recurrence, because if you have no thyroid tissue remaining in your body, they can test your blood for any thyroglobulin (presence of thyroid tissue will cause this to go up).
I guess it's up to you. There is a woman on line here, if you look at other threads, that had a small nodule, 1cm, and her endo. actually allowed her to use thyrogen, which the FDA has approved for follow up scans, but not treatment, in the US. This meant she did not have to go hypo. at all for her treatment. Since you have a borderline size nodule, that might be something to ask your doctor?
Either way, if you do choose RAI, it might be a bad couple of weeks of prep, but believe me, a year later, it's a distant memory, and your thyroid cancer incident is behind you.
Thank you so much for your advice. It is nice to find some people who actually have walked this road before.
I will have to talk to my doctor about seeing if there is a possibility of using the thyrogen. So she did that to prep for radiation or in place of radiation?
How long after RAI did it take for you to feel your normal self--emotionally, physically? Also, did you have to do a night in the hospital for that or was that outpatient for you?
It was outpatient....I wouldn't have minded inpatient, because I have kids, and had to stay at my parents house for the first week or so (I am extra conservative about protecting the kids).
My endo. could have put me on cytomel, T3 for a couple of weeks after surgery, until right before my RAI, but since he didn't, I was more hypo than necessary for a long time. Then, he put me on much too low doses to raise me very gradually, which was a bit too gradual, so while I felt much better a week or two into the meds, I didn't feel like myself for several months. But I think my case was unusual, because most endos. don't raise your meds. that slowly......my friend felt fine a week or two after RAI, because her doctor put her on a half dose the first week, and then a decent one thereafter, and she didn't go thru. what I did.
Fortunately, I was fine emotionally---I felt good being aggressive in killing the cancer in my body. I know pp. going thru. chemo and real radiation treatments----and this was so nothing compared to that, so my attitude was excellent. I did feel sluggish in the afternoons physically.
Thyrogen is given several days before your scan to artificially raise your TSH to a point that you will uptake RAI as needed. It's a prep used instead of going hypo, and you might want to look it up on the internet. But since it's only FDA approved for scans and follow ups, many doctors won't order it to prep for an initial treatment. I used it for follow up and it was great.
