Friday, June 5, 2015

Update on My "Crappy Bones"

For a while now, when I take my supplements, my daughter comes over and asks, "Are you taking medicine for your crappy bones?" She's four, and yes, she's heard me refer to my bones as crappy enough times to qualify them always as Mom's crappy bones.

I got my bone density scan results (they scanned my hips and lower back), and the results are normal. That's awesome, but it doesn't explain to me why the bones in my leg and foot were noted as shockingly soft by the surgeon. So my general practitioner spoke with my former oncologist. Generally, bisphophontes are not part of regular practice at the BC Cancer Agency yet. They could argue that I need it for premature menopause, but since I'm on hormone replacement therapy (low dose), my bones should be protected.

The news doesn't relieve me, if I'm being honest. The whole shittiness around my type of cancer, Triple Negative Breast Cancer, is that it's still relatively new on the landscape of breast cancer, and studies are being done here and there, and a lot is unknown. So while another country might have research and data to back up a particular finding, another country (like Canada) might not accept that data as fully proven or some such and follow suit with treatment. This is why young adults like my friend Pat ( has to do crowdfunding to get treatment to help him live--to go somewhere outside the country where there are experimental treatments that could help him.

When I was looking on the Triple Negative Breast Cancer forum, one survivor said that her oncologist has been giving her bisphophonates for years as a preventive measure against metastasis. But that's in the states. So this option is not available to me, according to Canada's findings and standards.

Here I am in a position that many patients often find themselves in: a medical mystery with no answers until some medical professional wants to do the extra legwork to find the answers or push to do something unorthodox. And in the meantime, I'm hoping that my doctors are right, that my fears are unfounded, that I won't get a bone metastasis even though from where I'm sitting (and have been sitting for two weeks), all signs point to a future in which I will meet cancer once again.

Monday, June 1, 2015

Dem Bones

Hi! It's been a long time since I've posted on this blog. I know that as time goes on, I feel like I move away from the cancer scene more and more--or at least, I would like to. When people see me, or they hear for the first time that I am a cancer survivor, they are surprised and comment on how healthy I look. They ask me how long I've been in remission (7 years and counting) and say how lucky I am to have "beaten" cancer. This is true. I am lucky. But what people don't realize that beating cancer entails having to endure life-long side effects, some of which are not anticipated or paid attention to much, especially when it comes to young adults. For example, even though I am in remission, I will deal with lymphedema, chronic fatigue and pain, and the hardening of radiated tissue for the rest of my life. But it's okay because I'm still here.

I had my 11th (?) surgery on Friday, May 22nd. Originally, I had gone to the orthopaedic surgeon to deal with my bunions, with which I was born. When I was a teenager, I had my right foot operated on, but the bunions (on both sides of my foot) grew back. Now that I'm older, the pain has been getting worse, especially since I also have arthritis. So a few months ago, I got to see a surgeon about my foot issues. Turns out, not only were the bunions a problem, but it seemed that my bones were shrinking, or that's how I understood it in my non-medical brain. The surgeon said that there was a gap between bones on the top of my foot, and that she would have to graft bone from below my knee and fuse it onto my foot to fix the gap. In addition, she'd have to insert a titanium rod into my calf to lengthen the tendon or something. Anyway, a fuck-tonne was going to be done to my left leg and foot (the right foot will be dealt with later, as the arthritis in it is bad and surgery would cause more chronic pain).

After my surgery, the surgeon told me that she was floored by how soft my bones are. She said that I have the bones of a 60 year old, that she wasn't expecting to see such deterioration. I asked her if my chemo had something to do with it, and she said maybe. But what was supposed to have taken 90 minutes for the operation took almost three and a half hours because the surgery was complicated by my soft bones.

When I saw my nurse practitioner, who also works at the cancer agency, a week later, and explained to her about the surgery and my bones, she was perplexed. She said that it's possible that the chemo could weaken the bones, but not to that degree. And I did just have my ovaries removed in December, but still, would my bones be that bad that fast? I take all the right amounts of calcium and vitamin D supplements and have been for years. I got a requisition to get a bone mass density screening done to see if I need to go on a bisphosphonate, a class of drugs for osteoporosis patients. And I'm not even 40 years old yet!

Coincidentally, as I left the doctor's office, I was checking Facebook and right there on my newsfeed was this article, posted by someone in the Triple Negative Breast Cancer Foundation group: This article basically describes how the particular breast cancer I had, Triple Negative Breast Cancer, causes holes to form in bones in order to produce a fertile ground for metastasis! And this is what floored me. For years during and after treatment, I'd been told that chemo could possibly thin my bones, that I would have to take extra calcium and Vitamin D to prevent the thinning. But this is the first time that I had heard that the cancer cells are actually forming holes in the bones to spread the cancer. I guess this is the problem with being "discharged" once you're in remission--there's little vigilance in what happens to you once the primary cancer is treated.

I'm lucky that I had this surgery. I'm lucky that I saw this article minutes after I talked to my doctor about my bones. I now have a plan to take bisphosphonates to try to slow down or stop this loss of bone mass and stop cancer's plan to make my bones its own nest for more cancer. And I'm lucky that I can tell other breast cancer patients and survivors my story--look into getting your bone density screened and talk to your oncologist or general practitioner about bisphosphonates, especially if you've had Triple Negative Breast Cancer. Hopefully there's still time to turn back the clock on these old bones.