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Sepia · 05-16-2006, 05:10 PM

Hello -
Its been a few years since I've been on this message board. I found it to be a great outlet for information, support, and feedback while I struggled with a neverending battle with Graves Disease in the late 90s.
In short (or long), I was diagnosed with Graves in late 1996 at the age of 23. I spent 7 years on medication - going through a short period of remission, but ultimately being faced with a more permanent means to ending the disease after meds started affecting my organs. I resisted having RAI done despite all this information that its safe. For myself, ingesting radioactive material was not an answer. And I'm glad I decided not to.
Over the course of the 7 years I saw 3 different doctors for treatment. Not getting better and wanting to resolve my condition, I decided to go to a teaching hospital (UCSF) for their opinion. Upon my first consultation, an intern palpated my throat and discovered I had a nodule. It turned out to be a "cold" one and I was told I'd need surgery.
After developing a stomach condition (and going through multitudes of tests for that which they never found a cause), I had the surgery a year later in 2003. My stomach condition got better post-surgery. I'm almost positive it was all related.

Unfortunately in the pathology exam of my thyroid tissue they found 3 spots of cancer. Whats even more unfortunate is that only about 90% of my thyroid was removed. So I have this potentially ticking thyroid cancer time bomb left in me.
At first my endo was not too concerned. For the first two years post-surgery I underwent regular bloodwork and ultrasounds to check to make sure no cancer was developing from the remaining tissue.
Then late last year she called me, with some urgency, that the amount of tissue I have left in me is statistically the amount they see in patients who later develop full cancer.
I was told I need to do either RAI or surgery asap.
I underwent an ultrasound and another 3 biopsies (ughh!!) last September. Results were inconclusive.

I moved to Seattle 5 months ago and am finally able to get in to see an Endo here at UW Medical Center. My consult is for this coming Monday. Though more invasive and expensive, I'm leaning towards surgery vs. RAI to eliminate my remaining tissue. I just want it out and to be done with. Plus, I dont want to be put on Prednisone which theyd haveto do with the RAI.

The last 10 years of dealing with this have been long and I'm ready to be done with all these tests. I'm still battling a bit with getting my Synthroid dosage regulated, and constantly battling my weight.

I'm hoping maybe someone who has been through a similar situation can share their story and how they dealt with pre or post thyroid cancer. Also, any tricks to managing weight gain? Its my understanding that now that my thyroid is gone, I can only boost my metabolism by changing dosage of my meds. Not really through excessive exercise. Any truth to this?

Thanks for reading and letting me share my story. And thanks in advance to those with advice. Also, if anyone needs support, I'm here.

Cheers.

Reece · 05-16-2006, 06:32 PM

Wow, you've sure been thru. alot.

I had papillary cancer last year (I knew it going into surgery from the fna). If I were you, I'd get the RAI to kill off the rest---just my opinion. You don't want to think about this anymore---also, I've read that post graves patients have a slightly increased chance of recurrence. I'm not sure that surgery will ablate all thyroid tissue remaining in your body---which is the main concern. If you get rid of all of it, they can monitor you with bloodwork over the years, and if they see an indication of thyroid tissue working, you can get treated for it again.

RAI wasn't such a big deal. The only tough part was going hypo, which I know somebody here didn't have to do, because her doctor allowed thyrogen injection.(FDA approved for scans, not treatment, but some do it anyway) My mom is going thru. chemo for breast cancer, and believe me, RAI was nothing. Other than a little soreness for a couple of days after taking the pill, there were no side effects other than being hypo, which was temporary. Why do you need predisone for RAI?

I had nothing else other than the RAI pill. I also had a high dose. But some nuclear medicine places do lower dose methods, like Columbia Presb. in NYC. Mine was ridiculously high, but it seems to have the same side effects higher or lower.

Fortunately, I have no weight issue. Also, now that there is absolutely no thyroid tissue in my body, it's easy to regulate synthroid. My endo. keeps my TSH suppressed, (which prevents a cancer recurrence) so I'm a bit on the hyper side, and I feel fine.

You've suffered enough. I think it's good to get this behind you. I'm not sure why you are afraid of the RAI. I know it's a challenge when Graves patients use it, because they go hypo, and it's hard to regulate meds, but as a cancer treatment, to irradicate the tissue and prevent a recurrence, I don't see the problem. My doctors were very helpful in helping me make my decisions, and supportive of every question and issue I raised, so perhaps that's why my attitude about it was more confident than most.

Sepia · 05-16-2006, 08:15 PM

Hi Reece - thanks for responding to my thread.

Because I have the eye disease oxymyopathy( ? ) and RAI aggravates the condition, my Endo has told me that I would need to go on a high dose of Prednisone if I have the RAI done so that the eyes dont get worse. The side effects of Prednisone are awful.
Also I was told that there is a chance that RAI won't kill all of the cancer cells. To me, I feel I have a better chance of eliminating the cancer completely and making sure it hasnt progressed to any other tissue/glands/organs if they just cut whatever is left out, and explore to make sure it's all gone. Why keep going through RAI if I can just get it out and done with. I guess it also depends on how much cancer has been detected?? I had 3 spots - all about 3mm. In retrospect, I see that not having the RAI done in the beginning as a good thing because the cancer may have developed later undetected, and into a later stage.

Its definitely something I will discuss when I have my consult on Monday. I'm glad I can get a further opinion on it.

Thanks so much for sharing your story. Its good to read about someone else's experiences and the information they got. Can never have too much of it.

niecsey · 05-17-2006, 03:03 AM

Hi you have been through it!! Alot of people dont know with graves you can have cancer....... l was reading a few weeks ago when l come across it.... very frightening. Just want to wish you good luck and 'welcome' you again xx

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