Some months ago, I was contacted by Northwestern Hospital to take part in a study designed to
deal with the side effects of Anastrazole, an estrogen blocker frequently prescribed as the last
phase of treatment for breast cancer patients. When I was diagnosed, it was presented at part
of the treatment plan for reducing my risk of recurrence. As I recall, it was supposed to reduce
the risk of recurrence for my type of tumor from 15% to 10%. At the time, hormone therapy
was almost a year off, and taking a pill every day sure sounded easy compared to the
chemotherapy and radiation that would come first.
I had been on Anastrazole about two years when she called, and I was feeling lucky because I
wasn’t experiencing any of the side effects I’d been warned about. I had had some hot flashes,
which are never fun, but they were mild compared to the first time around almost twenty years
ago. Seemed to be shorter, and I would flash back and forth between hot and cold very rapidly.
My friends got used to watching me take off a cardigan, put it back on, take it back off again,
back and forth several times over lunch or dinner. Gave me an excuse to buy some cute new
cardigans!
So when the nice young lady talked to me about Anastrazole side effects, primarily leg pain, I
told her I wouldn’t be a good candidate for the study because I wasn’t experiencing any. She
seemed surprised and asked if she could call again in six months. Sure, I said. Why not? I’m all
for advancing medical science. If they could come up with a good substitute for Anastrazole
lots of breast cancer survivors would be a lot happier. I’ve yet to talk to anyone who hasn’t had
an unpleasant experience with it.
But now, I belong to that group. Several months ago, I started complaining about shoulder pain
when I first woke up in the morning. I blamed my sleeping position (on my stomach, in spite of
years of trying to switch to side sleeping). Or perhaps it was swimming. I had learned the
backstroke, and that does indeed require good shoulder flexibility. It wasn’t too bad, and I
assumed it would go away eventually.
Then my knees started getting worse. I say “worse,” because I’ve experienced knee pain in
some degree starting about five years ago. Which is why I switched from speed walking to
swimming for my cardio. However, since the weight loss during chemo, which I’ve mostly
maintained, my knees were doing a lot better. Why would they now be getting worse?
I began to need more and more time after getting up from a seat at a table, or the very low
couch in my family room, before my legs would hold me and start working. It was getting
embarrassing. I don’t like to think people are giggling at the old lady whose legs don’t work
right. They work fine, all you young twits out there! Just give me 20 seconds!
I was putting all this together mentally when I saw my oncologist for my usual 6-month follow-
up visit in June. She said to me, “Do you find that you need a little time, after you first get up,
and then you take off just fine?” I said, “EXACTLY!” She said, “It’s the Anastrazole.”
Oh. Light bulb moment. All those symptoms I’d been reading about? They’d found me.
So apparently, it’s joint inflammation. Doesn’t bother me when I swim, doesn’t bother me
when I lift weights, doesn’t bother me much at all. As long as I’m moving. When I first get up,
different story altogether.
I started taking glucosamine, but I have no idea if it’s working or not. Tylenol is pretty useless,
and my doctor says no Motrin. So here I am, trying to cope, and trying to decide if I want to live
with the inflammation or give up the Anastrazole. I’ve pretty much decided to tough it out until
December, when I see my oncologist again. I think I could live with a 5% recurrence risk more
easily than with this much pain.
So guess what? The study lady called again and left a voicemail, and I returned her call. She
began to describe the study to me, and pointed out this was a “drug free” trial. Hold on, I said.
How can you find a substitute for Anastrazole without testing an alternative medication? That
was when she told me the study was about “pain management.” As she explained the
protocols, I was feeling more and more hesitant about signing up. When she told me the pain
management techniques would be learned on-line, I was really skeptical. She must have sensed
my feelings, because before I could even tell her I wasn’t interested, she told me I wasn’t a
good candidate for the study and ended the conversation.
Pain management. I’m sick to death of people who want to tell me how to “manage” pain.
How about you find a way to get rid of it? I don’t want to hear about diet, or stress levels, or
exercise programs, or meditation, or worst of all, “mindfulness.” I eat well, I’m still losing
weight, I work out five days a week, and if you want me less stressed, medicate my pain. I
meditate now and then because it’s good for me but I don’t need a study to do it.
And don’t use “pain management” as a synonym for “opioid treatment.” There are plenty of
bogus “pain management” programs out there already for people kidding themselves about
opioid addiction.
And by the way, how do you learn to manage pain on-line? Pain is a VERY real-world
phenomenon. I can just hear the health care folks now. “Well, have you thought about pain
management techniques? I can recommend our on-line program.” Or app. Or some other
stupid way to shift the responsibility from the health care provider to the patient. “Oh, you’re
experiencing pain? You must be DOING SOMETHING WRONG!!!”
Once again, as women, we are expected to sit quietly back and let people blame us for
experiencing something they should be helping us with. I wish I could get Study Lady back on
the phone again. I have a LOT more to say.
Well, that’s what cancer blogging is for. I’ve ranted about cancer, and cancer therapy, many
times to my friends and family, and now my on-line audience, and I won’t be stopping any time
soon. Not as long as people keep writing articles about how to reduce our risk for breast cancer
by eating right, working out, and staying slim and beautiful.
I’ll manage my personal health, my appearance, and my stress levels without you, thank you all
very much. YOU figure out how to manage my pain. And don’t call about any more studies
until you do.
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