Bare Bones & Hormones — Part I
Hard Facts About Brittle Bones
Here’s a piece of information I’ll bet you didn’t know — osteoporosis can kill you. It killed my mother. It killed the mother of one of my oldest friends. My friend’s mother literally crumbled to death, in pain, in a hospital bed, when she couldn’t move anymore because her bones wouldn’t hold her up. My mother died because she had about twenty compression fractures in her spine from neck to hips, resulting in a spinal column that looked like the top of a coat hanger. Because of this deformity, her heart and lungs and intestinal organs were unable to work properly, thereby causing a lethal combination of poor nutritional absorption mixed with cardiac and respiratory distress. Half of all women and a quarter of all men over age 50 will experience a bone fracture due to osteoporosis, and of those who fracture a hip, one third of them will die within a few years of that fracture, fully one fifth within a year.
Here’s something else I’ll bet you didn’t know — for post-menopausal women, the risk of sustaining a fracture of the hip, wrist, pelvis, vertebra or other bone is far greater than the combined risk of having breast, ovarian and uterine cancer. A woman’s risk for a hip fracture alone is equal to her combined risk for breast, uterine and ovarian cancer. Even for breast cancer survivors, most of us are far more likely to develop osteoporosis and sustain a fracture than we are to have a cancer recurrence. Throw in the sudden loss of estrogen due to aromatase inhibitors and oophorectomies, and our risk for bone loss is even worse than average. As it is, it has been estimated that one in five of all U.S. Caucasian and Asian women over 50 have osteoporosis, and about half of all women over 50 have early, measurable bone loss, also known as osteopenia, which can lead to osteoporosis. I’m one of them. My recent bone density scan put my hip and lower back squarely in the osteopenia camp.
As a physical therapist, I can personally attest to the fact that an alarming percentage of women at risk for bone loss never have a bone density scan, even after they fracture something, even though the occurrence of a fracture, any fracture, at any age, is considered an indicative risk factor for osteoporosis. Other risk factors that predispose men and women to osteoporosis include a family history of fractures or osteoporosis, natural or surgically-induced menopause, disease, alcohol use, medication side effects, hyperthyroidism, cancer, and simply growing older. Even when a radiologist can see and thus report a finding of osteoporosis on a regular X-ray that may be taken to confirm a fracture, all too often there is still no follow-up bone density scan, no treatment offered for the osteoporosis, nothing beyond treatment of the fracture itself. And when osteoporosis treatment is offered, it is often inadequate or just plain wrong. I wish I had $5 for every time a patient of mine who has a history of gastric reflux or some other intestinal disorder is prescribed Fosamax or Boniva, which are both bisphosphonates, even though bisphosphonates are clearly identified as inappropriate for folks with gastro-intestinal problems. And because bisphosphonates make their heartburn or ulcers worse, my patients will stop taking them, never getting some other kind of treatment to replace them. It’s enough to make a PT completely insane.
Estrogen — Friend or Foe?
Naturally, when you throw breast or ovarian cancer into the equation, it makes things more complicated. Most of us are aware of the big hormone replacement study that was suspended in 2002 because of the increases in heart disease and blood clots among the subjects. I could go on at some length about how the actual statistical significance of these increases was taken out of context and thereby inflated by the media, but I’ll spare you. And many of us know that after the suspension of this study, when droves of women on any kind of HRT suddenly stopped it, reports eventually came out crediting cessation of HRT for a decreased incidence of breast cancer. However, there was also a corresponding increase in osteoporosis. And I don’t remember any big splashy news reports about that. I have personally treated several women who suddenly stopped HRT in 2002, but did not replace it with anything, and consequently experienced a sudden loss of bone density resulting in pain, spinal deformity, fractures and lifelong disability. And aside from prescribing pain killers, their doctors have often done nothing to help them.
My mother, who died one year before Fosamax hit the market in 1995, brought on her own osteoporosis the same way. She had been taking HRT for several years, decided she was sick of it and stopped it, without informing her doctor, without taking a calcium supplement, and without any follow-up screening for bone density. Within five years, she developed the twenty compression fractures which were only discovered when an acute inability to pick up her head caused me to march her into her doctor’s office and demand an X-ray of her spine. It turned out to be the first spinal imaging this doctor had ever ordered for her, even though she’d been treating my increasingly humped-back mother for several years. The X-ray showed what any nitwit could see by looking at her, which is that she had by then developed severe spinal kyphosis due to osteoporosis. I was 35 at the time, and so help me, I wanted to slap this doctor upside the head. I didn’t. But I vowed at that moment that I would do everything I could to prevent the same fate for myself and others if I could.
“The Sky Is Falling! The Sky Is Falling!”
What I did was go to graduate school and become a PT, and later get certified training as an osteoporosis educator. Every year since, I’ve delivered at least one public education session about the disease. HRT has been much maligned, but in moderation, with proper monitoring by a physician, it is sometimes the best thing for treating the symptoms of menopause and preserving bone density while formulating a long-term strategy. And at least now, there are several non-hormonal options for treating bone loss, including a number of medications and nutritional supplements known to prevent or even reverse it, so that even when we lose our estrogen, we don’t have to crumble. Yet osteoporosis continues to be under-evaluated and under-treated. And for us cancer survivors and previvors and BRCA mutants, there are these oncologists running around like Chicken Little, hollering about how estrogen is bad, Bad, BAD, and trying to convince us to ferret out every last dastardly molecule. Well, forgive me if I am forced to holler back by pointing out once again that estrogen is not the enemy. Cancer is the enemy.
Nothing is ever simple where cancer is concerned and I’m about to make it even more confusing. But let me start with an assertion or three that has finally found a basis in medicine, unless you are one of those blinkered oncologists who have evidently forgotten that they wouldn’t be here, torturing us in the first place, were it not for estrogen. Assertion #1: Estrogen happens to be a remarkably useful substance. In addition to playing a rather key role in the continuation of the species, it makes us female, it helps our skeletons to develop in childhood and keeps them strong in adulthood; it helps us produce collagen to keep our skin and joints pliable; it keeps us from developing heart disease and strokes and high cholesterol; and it helps us think and focus. Pretty good stuff. Assertion #2, therefore, is that when our estrogen levels fluctuate, we certainly notice, whether it’s due to our monthly mensis or to pregnancy or to the first stirrings of peri-menopause. And Assertion #3 is that, when those levels plummet, with childbirth or oophorectomy or aromatase inhibitors or regular old menopause, our emotional and physical well-being can plummet as well. And finally, Assertion #4, estrogen is NOT the easily expendable substance that cancer docs may try to make us believe. Oh, and guess what? Removing its sources or preventing it from circulating in our bodies does not keep us from ever getting cancer. Yes, it may reduce the statistical likelihood, but it’s no guarantee.
Here’s where it gets complicated. We know that many breast cancers and ovarian cancers feed on estrogen. Research published earlier this year in the journal Cancer Research found that estrogen appears to suppress cancer-cell death somehow in estrogen-receptor-positive breast cancer, but very little is understood about why. Additional recent studies found that, rather than a single gene like BRCA, it appears that a group of genes may work in concert to enable hormone-sensitive breast and endometrial cancers to develop in the first place. These kinds of studies show promise for facilitating the development of therapies targeted at the actual mechanisms of tumor development. But in the meantime, in that kill-a-gnat-with-a-sledge-hammer approach characterizing much of cancer treatment, it’s easy to pick on estrogen itself and try to remove it from the equation altogether, despite what havoc that may wreak.
On the other hand, it has been documented for several years now that women who live in Asia and eat an Asian diet, which is typically high in soy products, low in animal fat and high in vegetables and fiber, have a significantly lower incidence of breast cancer than women in Western countries, who eat more animal fats and fewer vegetables. This observation has led to numerous studies about soy, isoflavones, phytoestrogens and other substances to see if there are further correlations between them and the increase or decrease of breast cancer risk. Unfortunately, there have been some compelling studies on both sides of the fence in the past several years. However, an excellent review of the research on this subject was published in Nutrition Journal 2008, 7:17 which concluded,
“In this analysis and commentary we attempt to outline current concerns regarding the estrogen-like effects of isoflavones in the breast focusing primarily on the clinical trial data and place these concerns in the context of recent evidence regarding estrogen therapy use in postmenopausal women. Overall, there is little clinical evidence to suggest that isoflavones will increase breast cancer risk in healthy women or worsen the prognosis of breast cancer patients.”
In fact, another study, published in the Journal of Clinical Oncology in 2005 found that, “Short-term HRT use does not negate the protective effect of [bilateral prophylactic oophorectomy] on subsequent breast cancer risk in BRCA1/2 mutation carriers.” This means that post-oophorectomy BRCA women can safely use real hormone therapy to mitigate the sudden onset of menopause and its symptoms after losing their ovaries and thus their chief source of estrogen. And they can continue to use phytoestrogens from soy and other foods after HRT to continue to treat those symptoms. All of this is good news for our bones as well, because there are now prescription and over-the-counter soy estrogen supplements available that have been demonstrated to effectively prevent osteoporosis.
All of this tells only part of the story of this complex relationship between breast cancer, estrogen and the prevention and treatment of bone loss. And that means there will be another blog post or two on the subject. So, stay tuned.
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Do I sound ungrateful? I’m not. I’m very grateful to have a “rest of my life.” But I really had no idea what I was in for two years ago. I had no idea that I would only just now be starting to feel like myself again. I had no idea that I would only now be able to get through a day of work without having to collapse for the rest of the night at the end of it. I had no idea that radiation does not, apparently, kill off the cells that initiate breast cancer tumors, but it did leave me with lasting cording and shoulder pain and scarring on the outside of my lung. I had no idea that people who don’t have chemo end up with the loss of brain function usually called ‘chemo brain,’ or that there is something called cancer-related fatigue that is widely prevalent and poorly understood. Or that I would have to give up a full 20% of my income because of all of the above, but at least still be able to work at all. 
I’ve said it before and I’ll say it again. I would not and could not have survived this entire sleigh ride had it not been for the dozens of women and men I’ve met in cyberspace on cancer forums and blogs. Before cancer, I did my social networking the old-fashioned way, i.e., mostly in person. But when I signed up with the online community at BreastCancer.org, No Surrender Breast Cancer Foundation, and other cancer networks, I discovered what is best about us humans. I cannot overstate the difference it has made in my life these last two years, and continues to make, to encounter the generosity, candor, humor, righteousness, wit, empathy and affection of all the women and men who shared all that and more with me and others in peer forums and on blogs. Thank you and bless you all. So many of you have become lifelong friends. It’s because of you that I am still here, with some sanity intact. It’s because of you that I scour the web, and sign up for research journals, and slog through articles and studies to understand some piece of this experience and bring that understanding back to you.
The problem with feeling that way is that, however apt the metaphor, neither 
The difference between that kind of loss and surviving cancer is that the dread never really lets up. Plus, there are legitimate reasons for that dread. It may recede to a large degree, and eventually you may actually be able to get through whole swaths of time forgetting that you ever had one of the more notoriously recurrent forms of cancer. But your next oncology check-up will bring it all back. For the rest of my life, there will be a part of me with an irrational hatred for certain addresses in Providence, addresses occupied by doctors’ offices, hospitals and cancer treatment centers. I’ve even come to hate a certain highway exit off of I-95. And picking up the phone to make an appointment for my next mammogram can make me feel faint. Once upon a time, mammograms were innocuous, if annoying, annual events that were simply part of the ritual of my annual physical, evidence of my being a conscientious steward of my own health. Of course, the reason I was getting them in the first place was to rule out cancer. But I certainly wasn’t worried about actually having it. Breast cancer? Me? Nah.
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