[Reposted on October 12, 2012.]
For a long time, complaining about the long and late-term side effects of radiation was a frequent theme on this blog. I haven’t bitched about being barbecued for a while now. That’s not because everything is just ducky, however. It’s only because (a) I got sick of talking about it, and (b) the problems it has left me with are a daily, constant presence. Oy, already…
A little background. First of all, this image here is only partly accurate. Yes, that is a radiation therapy gizmo, also known as a linear accelerator. For all you particle physics geeks out there, yes, linear accelerators are also known as ‘atom smashers.’ This is not a comforting thought when you are lying on the (of course, completely uncomfortable) table, with this massive thing that looks like a huge camera lens focussed on you, shining its little green crosshairs on your breast. That’s the other thing wrong with this image. You are not modestly covered up with a hospital gown. You are naked from the waist up. And the crosshairs are shining on your skin. And it’s cold in there. And you’re usually barely recovered from having some portion of your breast whacked off, so you have a hard time getting your arm over your head. And you have little tattoo dots on you, so they can aim the crosshairs at them before they zap you with death rays. But other than that…
Oh, and I actually found a web page describing how to make your own little magnetic linear accelerator at home. But I am NOT including a link. As if…
So, about four weeks after half my right breast was surgically removed, I had external beam radiation, for three weeks, per the Vancouver Protocol. This protocol is for patients with early breast cancers that can opt for lumpectomy (which was a slab-ectomy in my case). Standard, old-style radiation protocols call for six to seven weeks of radiation. The Vancouver Protocol uses slightly higher individual doses (called fractions) and cuts the number of visits in half. It also seems to lead to fewer nasty burns while you are having it, because by the time you start turning red, blistering, peeling, glowing in the dark, feeling like you want to bite someone, you’re almost all done. This was true in my case, as far as skin issues were concerned. Of course, no matter what kind of radiation you have, some of the side effects don’t start to show up until radiation is finished.
Radiation destroys cell DNA. The basic premise is that cancer cells don’t have the same ability to repair themselves that normal cells do. So, they are hoping that they zap you enough to damage the cancer cells and cause them to die, before they damage too many normal cells. But of course, radiation does damage normal cells, and even if these cells repair themselves, the repairs don’t return them to their pre-barbecued state. This is particularly true for the muscle, tendon, skin, lung, lymphatic and other soft tissue cells that happen to get in the way of the death rays. The repairs our bodies undertake are imperfect; instead of nice, brandy new muscle cells, for instance, the body may end up replacing the damaged tissue with more fibrous tissue that doesn’t act like undamaged muscle tissue. Fibrous tissue isn’t as stretchy. Fibrous tissue sticks to itself, a lovely phenomenon called adhesions. In other words, scar tissue. The scar tissue you see along a healed surgical incision is this kind of stuff. You can’t see the scar tissue that you end up with inside after radiation, but you can sure feel it.
I don’t know about your radiation oncologist, but mine was, shall we say, less than informative. And that’s putting it very, very politely. Let’s just say that informed consent was an unknown concept with this dude. Denial he was well acquainted with. Following is a list of problems I developed during, after, and waaaaay after having radiation. I was pretty much told that radiation had nothing to do with nearly any of these problems. But I know better. Research backs me up. So, because my rad onc was essentially a lying sack of unsmashed atoms, the only help I ever got from him for any of these problems was a jar of Silvadene. And actually the nurse gave me that.
- Massive, body-slamming fatigue, which started after the 7th treatment. I haven’t been the same since.
- Folliculitis; this appeared as a bunch of teeny red blisters that weeped, and all my little skin hairs fell out. Bizarre.
- Burn, baby, burn. No explanation necessary.
- Decreased red and white blood cell count, suppression of immune function . This wasn’t even checked by the rad onc. Had to get my primary care doc to order the lab tests. Duh.
- Massive, extremely nasty respiratory infection by day ten of treatment. Not uncommon. The radiation field is over one side of your upper respiratory system, for one thing, and for another, your immune system is whacked. In the midst of a hospital complex that housed roughly 1600 doctors, no one at this ‘comprehensive cancer treatment center’ was capable of confirming the diagnosis or writing me a prescription for Zithromax. Instead, I had to crawl home, call my primary care doc on a Friday afternoon, beg them to squeeze me in, and get treated. Honestly, I would have even spelled Z-i-t-h-r-o-m-a-x for the rad onc, if that’s what his problem was.
- Bright red skin, big, blown-up armpit. This occurred about 3 days after I finished radiation. I remember that the armpit theme became a hot (literally) topic with my online radiation group. Sheer, unadulterated misery. At its worst, I couldn’t bear any pressure whatsoever over my barbecued self. All I could do was lie in bed, naked from the waist up, and whimper a lot.
- Fatigue, fatigue, fatigue. We’re in the post-radiation wasteland from here on out.
- Swelling, swelling, swelling.
- More upper respiratory infections.
- Continuing low red and white blood count, whacked out immune system. Now we’re about nine months post-radiation. Was also on tamoxifen by then, which just added to the fun.
- Signed up for a research study on post-treatment fatigue for folks with breast and prostate cancer at U-Conn Cancer Center. GOD BLESS YOU, YOU GUYS!!
- Developed chronic cough and shortness of breath. This was about a year after radiaton. After lots of back and forthing and ass-covering ambiguity and chest X-rays and CT scans, was diagnosed with asthma/acute bronchial inflammation, and told I had scar tissue on the pleural covering of my lung in the radiation field. Pulmonary function tests were, thank heaven, normal. Got drugs. Felt better. Felt pissed off at rad onc all over again.
- Meanwhile, had slight lymphedema early on, which turned into chronic axillary cording. Oh, goodie. Had bowstrings from my elbow through my armpit and down the right side of my trunk. My chest muscles felt like singed shrink wrap. I couldn’t raise my arm over my head. I had PT for three months. This all started immediately after radiation and continues to this day.
- Chronic adhesive capsulitis in shoulder, chronic spasms in trunk and chest muscles. My daily nemesis. Wake up every day feeling like my right side has been squashed by an elephant. As long as I stretch, play with my Theraband and take pain meds now and then, I can function. I also had to change my computer mouse for trackball thingy.
- Weird, occasionally sharp breast pain. Sometimes I get these incredible charly-horse spasms down the front of my trunk, from collarbone to waist, on my right side, when I bend over too quickly to pick something up. Still happens. Intensely nasty.
- Still have fatigue now and then. More now than then. Still taking neurostimulants. Also still have trouble sleeping well. There’s nothing quite like insomnia when you’re exhausted. Really special.
So, there you have it. Well, there I have it. I hope you don’t, but do tell me if you do. All I can say is that you’re not alone. It’s been three-and-a-half years since I finished radiation. Radiation has not, sadly, finished with me. I’ll include a few helpful links below.
Arm & Shoulder Pain After Breast Cancer
Shoulder girdle exercises
Coming Up for Air — some details about soft tissue pain, lymphedema, cording, and respiratory side effects from radiation.
Info about cording and axillary web syndrome. Also a great resource for lymphedema.
LymphNotes.com. Another good resource about lymphedema.
The F Word. The nasty, but necessary, truth about post-cancer fatigue.
Adapting: Practical Stuff for Hands & Arms. Trackballs, ergonomic computer keyboards, and other stuff for those of us with impairments.
Losing It — And Trying to Get It Back. Fatigue and cognitive dysfunction revisited. Except I was even more pissed off by then.
Clinical Implications of Pulmonary Changes After Breast Cancer Radiation. Oy.