Wednesday, January 10, 2007

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

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.


Aurelia said...

Just delurking to say that I went over there and commented. Good post!

vagus said...

thanks for stopping by. though one needs to consider the manner in which something is said; not possible from just reading a sentence and not actually observing the interaction. nothing is said to insult the patient's intelligence as you implied, or to make light of the situation, but merely to give some reassurance that cancer does not mean death. because although cancer IS cancer, different cancers are VASTLY different.
i've patients wanting to cancel weddings, or write their last will & testament, when they get their thyroid cancer diagnosis, because they believed that they would be dead in a couple of years. so reassurance is required.
and like i said, some patients do find comfort in those words, believe it or not. though your points are well taken, and i accept that not everyone thinks alike. do appreciate the opinion and feedback.

nina said...

It seems one might react differently in the short run (it very much would counter the initial panic in me)and in the long run (it is not a good cancer, in the quality of life equation.)
I think, Joan, that countering the panic that EVERY cancer diagnosis brings forth may be a good thing, even though I understand that it is, in the long run, a demeaning thing to tell a person who has to suffer a life-time of cancer or post-cancer effects.
Perhaps, on reflection, it is better to simply give the data: the stats are with you: chances are overwhelming that you are going to stay alive. You will learn to deal with it. It will be hard, but know that your chances of living with it as opposed to dying from it are terrific.
My mother's doctor told her (thirty years ago, when she was diagnosed with breast cancer): I'll die before you ever will from this. He was right (sadly enough for him). I found those (macabre, on reflection) words somehow reassuring.

Kerry Crochets said...

Thank you, Joan, for posting this. Thank you so much! I can't tell you how many people I have had to explain this to!! And, I'm sorry, but it's NOT the easiest cancer to have. Any medical professional that says it is has never had it personally impact their life. Easy would be the cancer that is cut out and then doesn't have to be worried about daily for the rest of your life. Easy would be a cancer that the treatment for it doesn't come with the potential for developing other cancers further down the road. Easy would be not having to swallow the equivalent of toxic waste, then locking yourself away from the world for 7-12 days, while losing your sense of taste and impairing your vision and salivary glands.
There is nothing I hate worse than people telling me I have the "good" cancer. If you tell me that, you're being ignorant and insensitive, bottom line.

sirabi said...

You are so very right, Joan. There are other ways to be reassuring without being patronizing. Cancer -- any cancer -- is scary. We thycans do have an amazing survival rate, but that doesn't make the situation any less frightening.

We all need to share our stories.

Thank you for sharing yours.

Best of luck!