[amosmcd]

#1059517

It seems to be getting close to making a decision about RAI vs surgery for me, probably within the next couple months. I’m really worried about RAI because my Mom died a couple years ago of esophageal cancer, which may or may not have been a metastasis if her triple-negative breast cancer. A biopsy was inconclusive. Her mother and her mother’s 1st cousin both got breast cancer when they were 80 (my Mom was 75.) They died of old age. However, there is this family risk.

Both the esophageal and breast cancer in my Mom have made me leery of exposing myself to radiation that’s so close to both areas. Especially worrisome is the chance of having to possibly repeat RAI if it doesn’t work the first time. My endo says there are no studies linking RAI to head or neck cancer. Ge feels its safer than a TT.

My question is…what type of doctor could tell me if RAI would be safe for me or not given my family history? My primary care doc? An oncologist? A surgeon?

Any suggestions would be appreciated.

Amy

[AzGravesGuy]

#1175314

I have a family history of cancer as well. I had consultations with all 3 types of doctors you mentioned and researched it and lived in fear for years before I decided to swallow the yellow pill.

If I am advised to have another round of RAI I will be seeing a surgeon instead. Too much of a good thing as far as I am concerned.

A statistically significant connection between RAI and other cancers has yet to be proven. Does that make it the right treatment for you? Only you can decide.

Whatever you choose, it will be the best decision of your life. I got my life back and I hope the same happens for you.

[amosmcd]

#1175315

Thank you, AZGravesGuy.

[snelsen]

#1175316

Hi Amy, my mom had esophogeal cancer, too. Maybe genetic, but I suspect her smoking history was relevant.
In my own experience, looking back, I am glad I had a TT for the reasons you are concerned about. You never know what is ahead! Many years later, I had a very aggressive breast cancer, in both breasts, at different times. Lots of radiation. High doses. Although I realize they are doing a much better job doing targeted radiation, I still am reassured that I did not have RAI in the same general location.
For what is worth.
Shirley

[Bobbi]

#1175317

I think the main thing to do is find out why your endo thinks RAI would be safer for you than surgery. If it’s just a general comment about RAI having fewer complicating issues, etc. that’s not necessarily a sufficient reason for you to avoid pursuing surgery as an option. But if your doctor points out medical issues that are specific to YOU that might make surgery a less desireable option, then you need to weight those very carefully. You need to have a very good thyroid surgeon on board, however. This is someone who does lots of thyroidectomies with low complication results. As an option, surgery is somewhat more risky than RAI, IN GENERAL.

[Kimberly]

#1175318

Hello – This thread went into some additional detail on cancer risk and RAI, as well as the risks of surgery:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42443/

As Bobbi mentioned, though it’s important to understand the reasons for your doctor’s recommendation, and then make an informed choice.

Take care!

[vanillasky]

#1175319

When my time comes, I have already opted for RAI. My doctor never mentions surgery and for me, that’s a good thing.

My father had thyroid cancer. They operated 3 times and we nearly lost him from complications.

It was very scarey for me as a child, and after seeing that horrible scar he had, I plainly don’t want it!

He was in his 50’s and died at 89 and from natural causes. So he never got cancer after his thyroid was removed in any other parts of his body.

There are so many complications that can happen with that surgery. He had his vocal chords scrapped and could not speak very well for a long time. When he got his voice back, it was never the same.

A vein was tied off after the surgery, incisions closed and he began to choke on his own blood in the recovery room. They put him under again and tied off the same vein for the second time.

After we got him home, a few days later, he became hyp0calcemic. His hands were all twisted and he couldn’t walk. Back to the hospital where they filled him up with calcium pils that looked like they were meant for a horse. We went through hell with him and he went through hell too.

After RAI, I was already warned of “the dump.” He told me I would feel sick when the thyroid was destroyed and probably go hyper until the excessive hormone leaves the body. He says drinking water will wash everything out including the RAI. It sounds awful, but when I think of my father, I’m going to go swallow that pill.

But everyone has different reasons for how they go about it so it’s just my experience with it. Good luck to everyone no matter what their choice is.

[amosmcd]

#1175320

Hi, Bobbi and Kimberly–

RAI was my endo’s recommendation based on the general risks of RAI vs TT, not specific to me.

I will ask him in a few weeks for a recommendation for a head and neck surgeon I can talk to about the risks of TT. I’ve heard from this forum what most of them are, but I want to hear it from a surgeon. I’m lucky to have learned from the forum to use one who does them frequently and has a low complication rate, so I’ll find that out even if my endo recommends one in particular.

Thanks for everyone’s comments! I don’t want my vocal cords damaged, either, nor do I want problems with my parathyroids. Both treatments are scary serious, and not to be taken lightly.

Amy
p.s. Kimberly, thanks, I’ll check out that thread!

[WWWI2]

#1175321

What I still don’t understand is why doctors in the US appear to significantly prefer RAI over surgery and why in most other parts of the world doctors significantly prefer surgery over RAI.

There seems to be a bias, but in both directions. Why? Cost? Effectiveness? Risk? Ease of use?

Anyone?

[snelsen]

#1175322

No, I don’t. Radiology and nuclear medicine are very lucrative specialties, I do know that. I think it is what they learned in med school and residencies, what was “done” wherever they were, plus personal preferences and relationships,
plus ease of referrals. I would like to think an endo would be very candid if there were no major surgical facilities in the area, and tell us that. Also, it is tough for patients to travel to far away places. I know, for I have tried this a couple of time, but always had the fallback choice of having my eye surgeries in the area where I live. And I do regret some of my eye surgery choices.
But loved my TT choice.
Shirley

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