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.
Hi Donna,
Did you have to take the aromatase inhibitor pill for five years after your breast cancer? How much vitamin A and K did you decide to try? I have osteopenia and want to see if I can prevent any further damage, at least for a long time yet. I hope this and the PT exercises hold it at bay for you and good luck with the messed up back…no fun!
Hi, Nancy. No, I did not take anything after the breast cancer. I’m not sure why, but I think because I had already had the equivalent of ovarian and most of my estrogen was gone anyway. I went with 4,500 mg of Vitamin A and 600 mg of Vitamin K-2 (a combination of M-4 and M-7). It’s all a crap shoot. I based my decisions partly on this book:
It’s an odd read, but it does have some good information, and it’s cheap on Kindle.
Hi Donna,
I find your story about drawing the line in conference very interesting. I’ve had the same conversation about how all “the lines” have moved for acceptable blood pressure, lipid, cholesterol, and weight ranges. Pharmaceutical companies have been the push behind these changes. As a result, everyone I know is on statins and blood pressure medications as a normal practice. These arbitrary lines are drawn all the time. 10,000 steps a day; also based on absolutely nothing.
Boy, you are right about that. I read something recently about all the lines moving. A few years ago they said I was pre-diabetic. Then a study came out that said thin older adults with slightly higher glucose levels are not at risk of diabetes. All of the sudden, I get no flack from the doctor about my glucose. Like it never happened. Oh, and the 10,000 steps.
It might be time to watch Sleeper again. As I recall, hot fudge sundaes turn out to be health food.
I’ve been off and on with bone drugs. First I was on Aredia for a number of years and then switched to Zometa since the IV was only about 30 minutes. I haven’t had any Zometa in many years( 6??) can’t remember but I never had a problem with them and they did the job. I know there are other non-IV drugs for osteoporosis and maybe that would be easier. ??? Who knows??? Just do what’s best for you!
Good to know. I’m not saying I won’t take the meds — just want to explore options first. Thanks for sharing!
Thanks for the heads up about looking at options. I’m taking the post-cancer drug that impacts estrogen and within 2 years went from perfectly fine bone density to osteopenia. Since my mom has osteoporosis, I am concerned. Although she’s lost significant height, she never had a compression fracture nor broken any bones (even with falls as her balance has gotten worse with age) – knock on wood! I added more calcium and boosted weight bearing exercises; I had already had boosted Vitamin D as osteoporosis in known side effect of the drug. And I do regular yoga as well with I think helps a lot with balance and core strength. I’ll look into Vitamin A and K-2 now as well.
That is amazing to see the deterioration in just two years. I’m doing pretty much the same vitamins and exercise as you except for yoga — but I do intend to ask the physical therapist about something like that. My doctor agreed balance and core strength are probably more important than perfect bones. Glad you’ve got a handle on it!
Evidently my last bone density scan indicated I have osteopenia. I was devastated but then my doctor reassured me that my probability of fractures was less than 1%. She always takes these “results” and makes them sound less awful. I assume she’s being honest about it. I guess I trust her more than these “lines” that are drawn. It’s bad enough getting old, but then to have to hear you have this and that problem makes it worse. Some of this has to be normal for people our age.
A good doctor can really make all the difference. I liked how mine handled it, too.
Hi, Donna – Thank you for sharing all of this with us. I admire the decisions that you have made. I 100% agree that a good doctor is worth his/her weight in gold!!!
Thanks, Donna. Let’s hope they are good decisions!
Gosh Donna, that’s quite the roller coaster you’ve been on. So glad you’ve come out where you have. The fear of recurrence is a dark shadow we have to live with.
Himself has BP issues and I’ve noticed how that line has changed, and changed dramatically in the past few years. I’ve noticed the same with statins too, and am sure it’s happening in a whole variety of areas.
I believe becoming as educated as we can is vital, so we can have a grown up & informed conversation with our doctors (as you did). In the end, the final decision is always ours to take, as we’re the ones who get to live with the consequences. Onwards & upwards m’dear 🙂
I told myself not to go in and act like I’m the doctor. I wanted to hear her out. But she wanted to hear my thoughts first. It really was a great adult conversation. Yes to onwards and upwards!
I’ve been in the osteopenia range for a few years now, and so far my GP has not even broached the topic of meds for it (although history will have told him that I will be resistant). Long before that diagnosis, though, I had an accident (working out with a personal trainer in a gym, no less!) that destroyed a vertebra and I required a cervical fusion.
Luckily for me, I am friends with a great lawyer here in Pittsburgh, and his wife trained women with osteoporosis to exercise in pools, which is a great way to exercise without causing any damage. She uses the force of the water to push against, sort of emulating weights, and doing leg exercises against the force of the water. She spent a couple of hours in a pool with me showing me how to do these exercises, and it has been a great way to keep my neck supple. This was circa 2003 and to this day I start in the pool by treading water, supported by a noodle, for 20 minutes (a core exercise), followed by 20 minutes of these exercises, then swimming. I highly recommend looking around at local athletic facilities to see if they have someone who teaches this. If you can’t find anyone and are interested, I’m happy to Zoom or something to kind of demonstrate while on dry land. Also, I think that tai chi may be even better than yoga for balance and stability.
But also, remember that you don’t have any more osteoporosis than you had the day before the test. Don’t let it get into your head too much.
Hi Nina — this is great information! I visit the physical therapist Monday, and I will ask about the water exercises. I’ve also been reading about Tai Chi, which looks quite promising. I especially appreciate your words about not letting it get into my head. This one really did, and I’ve been regretting that I even got tested. But I’m starting to get over it.
Oh Dear.
My Mom had osteopororis and after Menopause I got it too. Then a lumbar vertrebra broke during lifting a laundry basket. It healed by itself and I was on Bisphosphonate drugs for a year or so.
Then I was like you, took Vitamin D and Calcium, do weight training several times a week and basta.
I would not take the risk of those bone density drugs any more.
Now it’s two years since I had a surgery (paraplegia could have happened) due to broken thoracic spine . A lot of titan replaces those broken spines. The aftermath is, that my torso is a few inch shorter now and that causes a tummy, which I hate.
Now I get an infusion of Ibandron every three month and like you, I daily take this mix of Vit.D3, A-K.
And hope for the best.
Not each woman diagnosed with osteoporis has to fear broke bones. It was simply “my share of shit” in this life. I think, your route is a good way to go, Donna.
Hope, you get better soon. Back pain is “Schmerzen aus der Hölle”.
Oh, Barbara, I am so sorry to hear that. I knew you’d had pain, but I didn’t know what caused it. It sounds like you have done well in spite of it all — tummy notwithstanding! It is fear for sure. My priority with the physical therapy is not to get pain-free but to overcome the fear. Thank you for contributing to this discussion — learning about your experience helps all of us.