I like good news and have happily shared my experience of surviving cancer as an inspiration to others. I’m far more reluctant to share unpleasant news, but I’ve decided it’s important to tell the whole story, not just the bits and pieces that flatter my self-image.
As a reminder, I had primary peritoneal cancer (like ovarian) and breast cancer. Both cancers were estrogen-sensitive. I had a total hysterectomy and have not had supplemental estrogen since I was 43 – about 22 years. While I knew this would put me at higher risk for low bone density, I hoped my healthy and active lifestyle would prevail.
Alas, it was not enough. According to my recent bone density test, I have osteoporosis. For me, that diagnosis comes with a lot of baggage. I don’t see myself as frail or fragile, and I don’t want to live like the slightest twitch will result in a fracture.
On top of that, I’ve done a good bit of reading and suspect osteoporosis is over-diagnosed. How a Bone Disease Grew to Fit the Prescription is an NPR article is from 2009. It’s a fascinating read about the origins of bone density testing and the role pharmaceutical companies played in shaping the definition of disease.
There was a meeting of osteoporosis “experts” in Italy, and one of their challenges was to decide what was normal aging and what wasn’t. It was hot, and they couldn’t reach consensus. Someone finally drew a line on a graph, and they said everyone on this side of the line has a disease. Then they split it up into two diseases – osteopenia and osteoporosis, depending on where you landed on the graph.
Doctors soon began pushing bisphosphonate drugs to treat low bone density. I’ve read about these medications, and I’m not primed to sign up. In addition to unpleasant short-term side effects, there are serious long-term risks and not a lot of evidence to suggest they actually reduce fractures.
My results put me just inside the line for osteoporosis. However, results come with two scores. Your “T” score compares you to an average healthy 30-year-old. Like many older women, my “T” score sucked. But you also get a “Z” score that compares you to someone of your age and gender. My “Z” score looked pretty good to me.
I mentioned this when I met with the doctor. I said, “If I’m reading this correctly, I’m in the 90th percentile for someone of my age and gender. And presumably, most of those women had estrogen, so I must be doing something right.” She said yes, but we don’t use the “Z” score to diagnose osteoporosis. I said, yes, that’s part of the racket. We both laughed.
She agreed with my proposal to wait a year and get retested before doing anything dramatic. She said compression fractures in the spine do happen to people with osteoporosis, and that’s always a risk. The doctor agreed the medications also have risks and downsides.
I asked for a referral to physical therapy so I could get some targeted exercises to help me strengthen my spine and hips. At the same time, I mentioned my back had been bothering me, and I needed to get that sorted out. She sent me for an X-ray.
The X-ray suggested the possibility of a compression fracture! I was devastated. Was I wrong about everything? Should I just bite the bullet and start the bone drugs? Will I have to quit golf forever? She sent me for an MRI.
Just to complicate things, after the X-ray but before the MRI, I slipped and fell in the bathroom. I’m OK, but my back hurts more than it did. I figured if I didn’t have a fracture before, I certainly have one now.
Imagine my surprise when the MRI revealed a messed up back with bulging discs and age-related degeneration similar to the messed up back I had when I got an MRI seven years ago. And no fractures! Even after the fall.
All in all, I’m relieved and feeling pretty good about my prospects. I’m eager to start physical therapy. And although I might regret it later, I’m still holding out on prescription meds for osteoporosis. I’ve done more reading on vitamins and have added K and A to my regime. Please know I am not an expert, nor am I suggesting these choices for anyone else because I could be completely wrong.
I think of osteoporosis as an unintended consequence of my cancer treatment, and I’m annoyed, but I’m still grateful it wasn’t a recurrence and look forward to many more years of mediocre golf.