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don't say it, don't even think it: what not to say to your thyca patient

Posted Jan 10 2007 12:00am
Medblogger Life (and death) posts about a thyroid cancer patient, and begins:
"If I had to pick a cancer to have, I'd pick thyroid cancer."
That's what I tell my patients...

My reply:
Speaking as a thyroid cancer patient, I can tell you that I cringe every time I hear that "If I had to pick a cancer..." line. No one would ever, ever choose cancer, and your saying so is patronizing and annoying. Your patients may not appear to be annoyed when you say this, but that's because they're still in shock from hearing the diagnosis of cancer, and they've still got that word, CANCER, echoing in their brains and they're trying to figure out what's going to happen them, etc. Take my word for it, they'll be irritated later.

Thyroid cancer is not the cancer you'd choose, and it's not a good cancer, either. It is often a manageable, treatable cancer, and the management and treatment options are the good things, not the cancer.

You are correct in that, for the vast majority of patients, thyroid cancer is a die with cancer rather than a die from cancer, but it's still cancer, and it is a cancer that we patients must confront every single day of our lives, post-thyroidectomy. Can you name another cancer that forces its patients to take suppressive chemotherapy every day for the rest of their lives, or they'll die? Our thyroid meds do double duty, providing us the necessary thyroid hormones our absent thyroids would produce, and also keeping our thyroid stimulating hormone very, very low to help prevent the growth of any remaining cancer cells. We have to take this medication every day without fail; we cannot survive without our thyroid hormone supplements. And if our dosage is incorrect or we take it incorrectly, we may face a recurrence that could otherwise have been avoided.

That's not to say that thyroid cancer patients are doomed to a miserable existence. I'm 27 months from diagnosis, and 15 months from my second surgery, which involved four neck dissection procedures. I'd say it took about six to eight months after my diagnosis to get my medication levels correct, and that was rough. Having to go on the low iodine diet prior to follow-up scans is tedious and, because it's easy to make a mistake that can invalidate the scan, nerve-wracking. Day-to-day, I have an active, full life with family and friends and work. But I still have cancer, and my tumor markers are hovering in a gray area that means I have to go for follow-up every few months, so I never get to not-think about it for very long. And even on days when I don't have to think about, I still have to take those meds.

My 8-year-old daughter asked me when I could stop taking my meds. Her experience with medication is limited to analgesics and the occasional antibiotic for strep throat or an ear infection, all of which are limited in time. I told her, "When I'm dead," and she was startled. I had to explain to her that I have to take them every day, for the rest of my life.

I'm OK with it now, but the idea does require some mental adjustment. I urge you not to continue to downplay the significant impact that a thyroid cancer diagnosis will have on your patients' lives.

I also want to apologize if I'm giving the impression that I think you don't care, because it's obvious that you do care, and care a lot. I'm just trying to counsel you against committing the most frequent insult to thyroid cancer patients' intelligence.

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