In September of 2011, I had my third breast cancer removed. In November of 2014, I learned I have a fourth breast cancer. As with all the others, this one is different in character from the previous breast cancers I’ve had. That means it’s known as a “primary” breast cancer, rather than a “recurrence” or a “metastasis”. For reasons I don’t understand, my body makes different kinds of breast cancers. Over the years, I’ve come to learn about each one … not as well as a medical student, but enough to be reasonably educated about my treatment options and decisions.
My initial response to this news (which I got late yesterday afternoon) could be characterized as “numbness”, or maybe I’m just used to it by now. I’m not frightened by it. I’m not worried or concerned about it. Based on what the breast cancer surgeon told me, the tumor size is less than 1 cm (Stage 1), and it’s not aggressive. As breast cancer tumors go, it’s on the whimpy side. In a very real sense, it’s hardly worth getting worked up about.
But here’s the thing: this breast has now had three breast cancers, and with this latest one, it will have had three surgeries (lumpectomies) to remove the tumors. It’s also been through radiation (first breast cancer), which means:
1. Radiation doesn’t prevent further breast cancer in the breast that’s been treated (I really wish I’d known that back in 2001);
2. Skin that’s been irradiated doesn’t heal as well as “normal” skin, so my post-surgical recovery is going to be less than predictable. I’m hoping for the best, of course. I always do.
The above is so matter-of-fact, I’d have skipped it, but in case you happen to be reading this at a time when you’re trying to decide whether to go through breast radiation, I decided to give it a mention. My best advice: learn all you can about it, and (most importantly) listen to your body. My experience with radiation didn’t work out all that well for me, but that doesn’t mean it won’t work for you. Do your homework, then give a healthy dose of credence to your gut instinct.
My homework now is to try to figure out what to do about my body’s inclination to make breast cancer. Since my last “bout” in 2011, I’ve been on supplements designed to keep breast cancer away. So this news will be upsetting to my very fine naturopathic doctor, who has been my guide on supplements and inspiration for alternative treatments. I can’t say I’ve been the idyllic patient (I drink too much wine), but I haven’t been entirely irresponsible either. In truth, it doesn’t matter: the approach didn’t work. So now what? I’m sure she’ll be wondering the same thing. It’s a set-back, but I already know there’s no sure cure. How can I blame anyone for doing their best to help and it didn’t work? I can’t.
Other than the decision to go through radiation in 2001 (a decision I regret), I’ve refused all other “standard care”. That means I’ve turned down chemo, Tamoxifen, Arimidex, and the like. Why? The side-effects can seriously impact quality of life, even after you stop taking the drugs. I know this because I’ve searched the web and found far too many women posting their stories about the experiences they’ve had with these drugs, including lingering and painful side effects for years after they’ve stopped taking them. Without consulting their doctor, many have taken themselves off the drugs. All too often, I’ve read “A life like this isn’t worth living”.
A rational reader would understandably wonder why I’d assume I’d have these negative side-effects, since not all patients do. I have only one answer for that: when it comes to my health, if something rare can happen it’s going to happen to me. If you were to put me on a bell curve with other breast cancer patients, I am — in all respects — at the far edge of the curve: no where NEAR the middle. Thus, even a small chance of life-long joint pain, or debilitating fatigue, isn’t worth the risk to me.
So here I go again. I’ll research what I can find and then listen to my body. One problem right off the bat: the medical community doesn’t follow women who refuse post-surgical care. Standard western medicine doesn’t know how many breast cancer patients have survived or died as a result of refusing chemo, radiation, drugs, and/or surgery. They have little information about, or interest in, what patients are doing for themselves. That means they don’t have all the relevant information when they present findings of their clinical trials. Since they don’t track, or include, information about those of us who don’t buy their wares, their information is incomplete. Or, put another way: their science is incomplete.
At best, I can do Google searches on terms for patients like me, which goes something like this: “65 year old with history of 4 primary breast cancers”. There are many variations for this kind of search (I tried all I could think of when I was at 3; researching for 4 won’t be easier). With luck, I might find a chat room where there’ll be a woman or two with a history similar to mine. But for the most part, this is a road I’ll need to pave for myself. So far, I’m okay with that.