I've been waiting to post until I knew what was next for my treatment, but honestly, I still don't know. It's been a frustrating couple of weeks. My surgeon, as I mentioned before, is really pushing for external beam radiation. He doesn't feel that radioactive iodine would take up well enough because of the amount of scar tissue present. We met with him on the 8th and had me all but completely convinced to do external radiation. My next step was to meet with me endocrinologist at the Seattle Cancer Care Alliance.
Jesse and I came to that appointment on the 11th prepared to discussed the risks and benefits of external radiation and ready to make a decision to go forward with it...but instead our doctor threw us for a loop. Instead, he made it clear that he feels that external beam radiation would have no benefits. He assured me that the "vast majority" of those patients end up with a feeding tube. This was a new risk that we hadn't been informed of yet, and one far more concerning to me than some hair loss or an intensely sore throat. We learned quickly that he had some records from my surgeon but hadn't discussed anything with him at all. I was angry and confused that I have two supposed "experts" who are recommending completely different treatment, and besides that, saying that the other treatment would do no good. And either my surgeon was omitting some very serious side effects of the treatment, or my endocrinologist was trying to scare me out of it. Who to trust? The surgeon, who has been inside of my neck and seen the cancer with his own eyes, or my endocrinologist, a supposedly "famous" expert in the treatment of thyroid cancer. I expressed my feelings of confusion and my endocrinologist agreed to phone my surgeon so they could come to a mutually agreeable recommendation for treatment. Unfortunately my surgeon was on vacation last week, so they are planning to confer this week.
In the midst of all of the confusion, I decided I had to gather more information. Third, forth, maybe even a fifth opinion. Last week Jesse and I met with a fantastic radiation oncologist at Evergreen Hospital. I may have gotten a little "VIP" treatment here - hey, it pays to know people who know people :) This doctor spent over an hour with us in a conference room, starting at the very beginning. As Jesse noted, this doc knew my history better than any of my other docs. He was obviously very, very thorough. Thankfully, he said he's never had a patient who ended up with a feeding tube from radiation for thyroid cancer (and he's been doing this for over 20 years). He said about a third of patients end up with IV fluids to prevent dehydration, but to me, an IV is pretty insignificant compared to a feeding tube. The biggest risk he is concerned about is the potential for a future cancer. And since I'm planning to live a long, long time, this is a big concern for me. He feels that the right direction to go would be a radioactive iodine scan to see if the cancer will take it up, and then a radioactive iodine treatment if it will. He then recommends an MRI every three months to watch closely that this cancer doesn't return. Whereas my surgeon felt I needed treatment within a month or risk damage to my nerve, the radiation doctor felt that with those frequent scans we'd have time to catch the cancer before it did any damage. The radiation doc said that there really just aren't any studies for my scenario - and that's why I'm getting such conflicting recommendations.
So, honestly, I really don't know what my next step will be. I'm waiting to hear what my surgeon and endocrinologist agree on. I'd prefer the "wait and watch" approach - but the radiation onc said this really isn't an option. Therefore, even though the prep and diet for the radioactive iodine is horrendous, and the treatment itself caused severe nausea, I feel that it's less invasive than the external radiation and I'd definitely be more inclined to go this route - and hope that it works.
I'm very confused as to why my endocrinologist would tell me this apparent lie about a feeding tube with radiation, and wondering if I should find a new doctor. But, I'm tired of starting over again with a new doctor who has to learn my history. It's so hard to find a good endocrinologist - there just aren't many of them. Those who are immersed in all of the research aren't always the best with patients. And, I'm not just a number in a study - I'm a person. It's also so annoying to have records at three different hospitals - the Cancer Care Alliance, the UW hospital, and Virginia Mason. And trying to keep track of the bills from all three.
Thank you so, so much to those of you who have donated to my cancer fund. It helps so much with the bills and all of the work I've had to miss. I really couldn't get through it all without your support.
I'll post an update when I know more...
In the meantime, a few photos from our perfect, simple wedding!