It’s been 6+ months since I was diagnosed with papillary thyroid cancer. You can’t begin to understand the emotions, thoughts, fears, doubt, and struggle that follows a cancer diagnosis until you experience it first-hand. Many of our closest friends don’t know how far into hell and back we came, particularly in the first 6 weeks after the diagnosis.
I was very fortunate to learn about antiangiogenic therapy as a possible form of treatment for my cancer. With the help of medical observation from our doctors, we proceeded to self-medicate according to this treatment method. I say self-medicate because in the US (being the highly litigious society that we are) MD’s expose themselves to a large liability risk if they prescripe or recommend a treatment method that, while effective, has not yet passed the rigors of research required by the standards bodies to pass as a standard treatment option. Our experience has really opened our eyes about this system, its limitations, and its strengths.
I’m writing today for two reasons:
- because last week we were dropped by our endocrinologist because of the risk of liability that has become prominant in the American health care system and
- because in the 6 months that we’ve been undergoing this treatment, the tumor has not responded fast enough the treatment and we honestly can’t be sure that any amount of progress made is attributed to my self-treatment.
I’ve had to learn some hard lessons this last week:
- In the eyes of the American medical system, I’m a liability first, a patient second (a very hard fact to swallow).
- At this period in history, there is no reliably accurate means of measuring a thyroid nodule’s growth. Ultrasounds appear to be so limited in their ability to measure a nodule’s size that they can be up to an entire centimeter off base. All an ultrasound can reliably confirm is that a tumor exists in a certain 2 dimensional space within your thyroid and it is X cm in size, give or take 1 cm. For our purposes, this is entirely unhelpful.
- The above being true, I have no reliable means of measuring the possible progress of my cancer’s gradual demise. I also have no measurable way of determining a causal relationship between what I’m doing to kill the cancer and what I’m seeing in an ultrasound. For all intents and purposes, I’m flying blind.
- All of the above being true, I have less visibility into my self-treatment, it’s results, and the damage my cancer may be doing to me than I have thought for the last 6 months. The risk factor of experiencing grave consequences is unmeasurably higher than I’ve known as well.
So what does this all mean? It means that I’m scheduled to remove my thyroid on 16 October. The worst-case scenario that I’ve seen in my mind is coming true (granted, not the ultimate worst-case scenario, but my own imagined worst-case scenario).
I’m angry. I’ve gone back and forth between being angry at the US, being angry at our health care system, being angry at my old endocrinologist (for other reasons), and being angry about living in a period of time where this angiogenic treatment is still too new. I have to remind myself that things could be worse; I could be living in a time where chemotherapy was the primary method of treatment for this cancer (as my old endocrinologist said repeatedly, “Chemotherapy is worse than death.”) . It still makes me angry that I live in a time before a better treatment method can be validated and now I have to live without a thyroid gland permanently. If you want to know how angry I am about this, feel free to ask me about it. Be prepare for an expletive-filled conversation too, cause I won’t be in the mood to hold back (I’m not intending to be snarky, I’m just warning you where my head’s at right now ;-) ).
Some good things have come from this, regardless of the circumstances (e.g., I’ve gone from weighing 240 pounds at the beginning of 2015 to weighing just barely under 200 pounds now). More than ever before, the changes that I’ve made to my lifestyle will have to remain permanent to avoid exacerbating the effects of my impending hypothyroidism and risking the return of my cancer.
Thanks to everyone for keeping up with all of this. I have the best family and friends around the globe that anyone could ask for. You’ve all been patient with my complaints, my (sometimes) inappropriate use of humor to cope, and my occasional withdrawals and anti-social behavior on the low days (which have been fewer as time has gone by). Thank you for the dinners, watching my son while we go to doctor appointments, and the nights of fun activities meant to distract us from reality. I love and appreciate you all.
I can’t think of a better way to end this post by asking: does anyone know a good endocrinologist in Utah County? I’m in the market for one ;-)