Getting radiation can really be the pits — especially the armpits, as it turns out. It’s definitely one of those experiences that makes you think, “Oh, if I knew then what I know now…”
First of all, it’s just an odd experience. For more about the oddity of it, I recommend one of my pages, “Glowing in the Dark.” In and of itself, it doesn’t hurt. It’s what it does to one’s tissue that hurts. And can keep hurting, while you’re still getting radiation, and for a long, long time after you’re done — well-done, that is. Just stick a fork in me.
It was recommended that I get radiation after my partial mastectomy. I was told that I had a one in three chance of having a recurrence of cancer in what was left of my right breast, and that radiation would cut that risk in half. Oh, goody. That was the day I started referring to breast cancer as The Stalker.
One in three?? I couldn’t believe it. I’d had in situ ductal carcinoma, which means it was contained in my mammary ducts and had not invaded the surrounding tissue. I had not had to have any nodes removed or biopsied. How could I have a one in three recurrence risk? This just took my breath away. But I was still a naive, novice breast cancer patient then, a walking ball of anxiety trying to stave off full-blown panic. So I was still inclined to trust the doctors and believe what they told me, to accept their advice without question. That changed from that day forth, let me assure you. I was so unnerved by that initial visit with the radiation oncologist, it somehow shook loose my lifelong natural skepticism from whatever dark corner it had been hiding in up to that point. And soon, I was feeling like my old self again — cynical, rebellious and disillusioned, all nicely seasoned with a smidgen of post-menopausal irritability. Thus it was that I began to learn how oncologists can be fond of frightening their patients with statistics which they quote out of context and don’t explain. Nor do they pay much heed to the principle of informed consent. For more on that topic, you can read my previous post on Cancer 101.
Thanks to my online peer support forum, I quickly discovered that there were indeed other protocols for radiation than the single option my radiation oncologist presented to me. Typical “my-way-or-the-highway” behavior from him. With a little investigation, I learned that I did not necessarily have to spend six or seven weeks going to radiation treatments every day. There was a protocol that took only three weeks, and one that took only a week. I don’t know why my doctor had not mentioned these other options. I’ll probably never know. I do know that I was quite annoyed when I found out. Perhaps he thought I had nothing better to do. Perhaps he didn’t realize that I did not have a trust fund or a rich husband, and that I needed to get back to work and pay the bills, and that I had a job that would be too difficult to perform while I was getting radiation, so that I would have to stay out of work until it was finished. He could have asked me about all this, but he didn’t. In any case, I will give him credit for evaluating me for these other protocols when I brought them up at my next visit. And it did turn out that I was able to do a three-week, sixteen-visit protocol instead. Still, he never told me that radiation could and would, as it turned out, start me down a long, awful, frustrating journey with cancer-related fatigue. “Well, you might need an extra hour or two of sleep for a while,” he said. Hah! How ’bout an extra year or two?
Nor was I informed that radiation could cause so much tissue damage, potentially leading to something known as axillary web syndrome, commonly referred to as cording, which could lead to lymphedema. There was another topic I had to discover for myself. Not only that, but getting successful treatment for cording and tissue tightness did not mean it was gone forever. It has this aggravating tendency to keep coming back, over and over and over again, even years after you’ve allegedly finished cancer treatment. So, here I am, thirteen months after finishing radiation, with shoulder and chest pain, and decreased range of motion, having to get physical therapy for cording.
Well, misery loves company, they say. A number of my Sistahs are having similar problems. Just a few days ago, my friend Debbie in Ohio asked me to ‘splain why radiation causes all this trouble. Here’s what I told her. Prepare yourself for a crash course in particle physics. Sort of.
Radiation or radiotherapy is usually administered by a huge machine called a linear accelerator. Yes, this is one of those machines that smashes atoms around. What the machine is accelerating are subatomic particles. Don’t make me get into subatomic particles, okay? Anyway, this form of radiation is called ionizing radiation, subatomic particles or electromagnetic waves that yank electrons from other atoms or molecules, which changes the electrical charge of the atoms or molecules, thereby “ionizing” them. If you do this to cells in the body, you damage the cells’ DNA. So, that’s how radiation therapy works, by damaging cell DNA. And without working DNA, a cell can’t reproduce or maintain itself, and thus it dies.
Now, the reason that radiation oncologists can get away with blasting us this way is that it turns out that cancer cells can’t repair themselves as well as normal cells can. So, the docs try to fry us with enough radiation to exceed the ability of the cancer cells to recover, thereby causing them to die, but not so much that the normal cells can’t recover. However, the normal cells do get damaged. The damage is diffuse, because we’re talking about subatomic particles being sprayed all through the treated area. So, some of the damage is seen fairly quickly — things like folliculitis, where the hair follicles become inflamed and the hair in the radiated area falls out. But a lot of the damage doesn’t manifest immediately or externally, but develops over time. So, as the normal cells in your skin and your muscle tissue and your blood vessels and your lymphatic vessels are all trying to find and fix all these little bits of damage, the repair tissue they lay down to repair themselves tends to be more fibrotic and less elastic than the original tissue it’s replacing. Imagine what happens to shrink wrap when exposed to a heat source. That’s what happens to our soft tissue after radiation, only more slowly. What they’ll generally admit to is that this damage occurs over the next two years following radiation treatment. But it can manifest for much longer than that.
Meanwhile, all this ongoing cell restoration creates internal inflammation, which shows up as swelling and causes pain. Normally, the blood and lymph vessels will help drain the excess fluid away from the area, but after radiation, the vessels themselves are damaged and can’t do as good a job. So, our muscle tissue contracts, causing us to lose range of motion and develop adhesions; our breast area or armpit or even the whole arm may swell up; and our lymphatic vessels get clogged up with extra fluid that they can’t recirculate because they’ve been damaged; plus we may have already lost lymph nodes to surgery. And it all just gets to be a big ol’ snarled-up hairball in there.
And that, Grasshopper, is why your shoulder and your breast and your armpit can hurt for weeks or months or even years after they’ve been cooked. Oh, the fun never stops with cancer, does it?
Resources for the Treatment of Cording and Lymphedema
National Cancer Institute PDQ on Lymphedema
LymphNet.org, site of the National Lymphedema Network
Step Up, Speak Out – What We Need Healthcare Providers to Know About Lymphedema
Step Up, Speak Out – Cording and Axillary Web Syndrome
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