Wednesday, 7 October 2015

Why I Walked Out on Breast Radiation

Some of my friends and family know I’ve recently had a bout with breast cancer. Others don’t. It’s not something I’ve shouted from the rooftops or felt like posting about on Facebook, like one often does with holidays, sunsets and magical meals.  I’ve considered the pros and cons of writing a blog post (or several) on the topic, which opens it up to a bigger and even less personal audience, and have been hesitant about that. But I feel like I want to share a bit of my experience.

Monday of this week, I called up the hospital where I’ve been undergoing radiation—7 treatments completed, 12 to go—and told them I wanted to cancel not only the day’s appointment, but that I wanted to pull out of the program entirely. “Radiation,” I told them, “is just not working for me.” Not surprisingly, I got a call back a few minutes later and a request for me to come in and talk to the oncologist on call, “Just to make sure you have all the information you need and that you understand the ramifications of withdrawing from the program.” I did go in and spoke with a very nice doctor, but he did not change my mind about withdrawing.

I’ve written several blog posts on cancer previously (and before my diagnosis): Do Antidepressants Cause Breast Cancer?, Are MammogramsGood for You?, and RIP David Servan-Schreiber—A Tribute to the Anti-Cancer Man among others. So this is not a topic that was unfamiliar to me prior to diagnosis. I can say, however, that actually HAVING a cancer diagnosis involves not only a pretty sharp learning curve, but it can also be an emotional roller coaster as you confront not only thoughts about your own mortality, but constant choices about what to do and what not to do, both medically and within your personal life.

I am pretty lucky. My single tumour was small and “stage 1” meaning it had not gone into the lymph nodes (see cancer stages), and when removed surgically the margins were deemed “clear” (meaning the cancer cells hadn’t spread into the tissue surrounding the tumour). Surgery was performed as a day procedure and involved a lumpectomy plus removal of four underarm lymph nodes for biopsy. Upon analysis, the tumour was found to have “medullary features”, which puts it into a fairly rare class as cancer tumours go (see medullary breast cancer), although going by appearance it was ranked “grade 3” which means aggressive (see cancer grades).

It was a no-brainer for me to turn down the offered chemotherapy. Anyone who had read a number of my blog posts, or who knows me personally, will know I’m seriously against blanket poisoning of environments to eradicate pests (anti-1080 folks will be LOL). Radiation, though, was on the cards from day one.

The day I got the news from the surgeon that my lump biopsy showed cancer, he followed in almost the same breath, with “I’ve scheduled your surgery for Friday. I can do either a mastectomy (breast removal) or breast conservation surgery (lumpectomy) which means removing the cancer and some surrounding tissue but preserving the bulk of the breast, but if I do that, you will have to follow that up with several weeks of radiation. If you don’t agree to do the radiation, I will need to do a mastectomy. What do you want to do?” Or words to that effect. Of course I opted for the less-invasive option and the matter of doing radiation seemed to be fait accompli.

It wasn’t until I met with my radiation oncologist six weeks after surgery, and she explained the plan and procedure and gave me a fact sheet that I began to have second thoughts. Breast radiation is used to kill any errant cancer cells that might have been left behind after surgery in the breast, and it reduces the risk of cancer recurring in the treated breast by 20-30%. That’s according to my oncologist, but statistics seem to vary. One recent study followed 1010 women who had had lumpectomies for 16 years. Half of the women had radiation following surgery, and half did not. Of those who had radiation, 18% had a tumour recurrence in the affected breast during that 16 years; of those who did not have a radiation follow-up, 31% had a local recurrence, yielding an impressive reduced recurrence rate of 48% with radiation. There was no difference in overall survival rate.

Radiation specifically targets fast-growing cells but it is not capable of knowing the difference between cancer cells and ordinary body cells, so any cells in the target area that are growing fast and dividing are killed or at least seriously compromised. That’s why the most common and obvious side effect of breast radiation is skin damage, because your skin cells are constantly renewing themselves and are fast-dividing cells, and because your skin is visible. Commonly, this results in a sunburn effect with reddened skin, sometimes peeling, and some skin discomfort which can be soothed (but not prevented) with allowed lotions. However, all of the cells within a breast are affected, and because they can’t actually tighten the beams of radiation enough, or go around curves, a bit of lung tissue, local ribs, and sometimes even a bit of the heart are also affected. Tiredness is a common early (and usually temporary) side effect, perhaps as a result of the impairing of the immune system (radiation kills lymphocytes), along with breast swelling, a sore chest wall, and sometimes the development of a cough due to lung damage.

Long term effects from radiation include a general “aging” and re-shaping of the breast, increased firmness of breast tissue, especially around the surgery scar(s), a slightly increased risk of rib fractures, and a slightly increased risk of developing cancer elsewhere. Radiation exposure does, after all, cause cancer.

Mayo Clinic illustration 
Having promised my surgeon that I’d do radiation, and encouraged to do so by everyone I met within the medical community and most friends and family members (the others tactfully giving no opinion other than, “Only you can make that decision”) I ploughed ahead and signed the paperwork authorizing the treatment. A few days later I found myself stretched out on the table as two cheerful technicians marked me up, aligned the equipment, and applied the tattoos (three mole-sized permanent marks). The following week, it was game on.

The odd thing was, every day I walked out of the hospital after my treatment—it is quick, and doesn’t hurt while it is happening—with the most horrible sick feeling in the pit of my stomach and a lump in my throat, and more than once I was crying. Why did doing this upset me so much?

It seemed like a betrayal to my body. Having been doing its best to counteract a problem (medullary cancers are attacked by the immune system, so my body was fighting the cancer even before the surgery), I first let it be cut up with surgery (and I’d do that again) and then just when recovery was looking pretty good and the wounds were looking somewhat healed, here I was, further damaging my poor breast tissue, all under the assumption that there MIGHT be some errant cancer cells doing a walkabout in my breast, and that if so, they’d be fast-enough growing to be whacked by the radiation. (Medullary cancers, I’ve learned, are often not fast growing). Furthermore, I kept thinking “at least when this is over, I can begin to heal. In a month.” Um…wait a minute.  When this is over I can begin? Shouldn’t medicine be about healing and supporting health now? Why inflict further damage to already damaged tissue as a “preventative”?

I realized that I was doing these radiation treatments mostly because other people thought I should. I realized my gut feeling was to walk away. My heart and throat told me to walk away after each dose. And even my cognitive/head thinking was finding it increasingly difficult to justify the pro over the cons. My body wasn’t in alignment with my actions. And nothing about undergoing radiation was in alignment with my core belief that the body is a self-healing ecosystem that should be nurtured and helped to heal at all times.  It felt wrong. “What would you do if fear wasn’t stopping you?” I asked myself. And the answer was clear.

 It took courage to call the hospital and say I wasn’t going back. It meant accepting that I could be making a mistake, and the cancer could come back, and the authorities will scold me if it does. But it feels like a weight has lifted. Whatever comes in the future, I accept the results of my decision.  And although I find it hard to consider this cancer experience a blessing as some “more advanced souls” might do, I acknowledge the power of this episode to broaden my experiences and clarify my values.

See my next post for recommended resources and inspirational stories about cancer survival.

No comments:

Post a Comment

Thank you for your feedback. Allow time for it to be posted.