The Gift That Keeps On Giving


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?

axillary webbingNor 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, 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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This entry was written by Kathi, posted on Friday, November 20, 2009 at 06:11 am, filed under Fatigue, Health & Healthcare, Lymphedema & Cording, Nitty Gritty, Radiation, Surgery & Reconstruction, Survivorship and tagged , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

5 Responses to “The Gift That Keeps On Giving”

  1. I am one of the lucky person to have found a good doctor who along with his wife took personal interest and allowed me to make wise decisions. He suggested that I do not require radiation as I went for total radical masectomy and today after reading your post (honestly I did not have even 1/4 of the info you have put there) I am so grateful to him.

  2. Dear Accidental Amazon, My heart almost stopped when I read your article… I was once a Stage 1A breast cancer patient over 10 years ago and I refused radiation treatment because I knew how damaging it is, but I didn’t know really how damaging it is until I read your about your experience.. the extent of tissue damage, etc. I got my tatoos last week in four spots to start radiation because I am now a Stage 4 breast cancer patient, who had 14 positive lymph nodes in my last surgery and was diagnosed with metastasis to the spine and ribs a couple of weeks ago. Even so they still don’t want to radiate the back ‘just’ the armpit, the whole chest wall, lymph nodes close to the neck, etc. After reading your experience I am even more concerned what radiation is going to do to my already very ‘tight and uncomfortable chest’ (both my breast was removed in a mastectomy Oct 2008…) sounded like maybe I would not be able to wear my prostesis, or even clothes…. and I work in a law firm…. (: I am cancelling my followup appointment Dec 2 just so I can THINK, and right now I am just ‘talking outload’ to you because your writing really resonates with me. You are a wonderful writer and I will read more. Breast cancer treatment decisions really suck as you know and it is a lonely lonely business. Thank you for being out there and ”putting a face’ on the terrible effects of conventional treatments for breast cancer. I have done only surgery together with alternative treatments all these years since I was first diagnosed in 1997, and now I feel I will have to get ‘more aggessive’ – it is so HARD to switch grear and choose something that I KNOW is so terrible damaging to my body….. It doesn’t make sense.. I am still trying to ‘talk myself into it,’ and I liked one of your comments” that said: “At least I am still here to complain about all of it.’ something like that. I for one am glad that you are.

  3. Hello again. I will most certainly check out Your “Blind-sided Cancer 101, Informed Consent’ section. Thank you for talking about physical theraphy.
    I just called and made an appointment today, but could not get in right away. I have another place outside of my insurance I can try. I will contact you again if these don’t pan out. I felt so resurred reading your post ‘knowing’ there is something that can be done about all these things.

    You said you are not so sure radiation was neccessary in ‘your case. I think you are right. When I was diagnosed with DCIS and LCIS in 1997 I had many opinions and did a lot of research here in Los Angeles at many of the ‘prestegious’ hospitals here. And I got one older oncologist at UCLA to ‘agree with me’ that in my case, given the fact that I had “in situ’ cancer, he said, that ‘maybe’ the risk of radiation outweighed the benefit.
    Because the benefit was close to zero. He said ‘in situ’ means ‘in place,’ – a type of cancer THAT DOES NOT HAVE THE ABILITY TO SPREAD. In other words he didn’t think it was neccessary to add on radiation to my lumpectomy, even though at that time we could NOT get clean margins, and eventually a mastectomy was recommended, which I did not have at that time. Instead I did a half-ass alternative medecine breast cancer protocol, which I eventually just gave up little by little. Pretty soon my diet was back to ‘normal.’ I ate sugar again, and stressed myself out at my job. After 10 years my breast cancer recurred in the other breast just like lobular breast cancer has a tendency to do in 25% of cases. At this time I had a double mastectomy the hardest decision I’ve ever had to do in my life.
    I don’t regret that I didn’t do all the ‘conventional treatments’ before.
    I know that at the time nobody could have convinced me it was neccessary. Even Dr Susan Love said at the time that 50% of doctors think DCIS and LCIS is a form of ‘pre-cancer,’ an ‘in situ’ cancer that does not have the abilty to spread and kill you. But the problem, she said, is that we do not know when and how the cell changes and become invasive. If I am correctly informed Dr Love is now doing reseach how different cancer cells develope and act so that we can get away from the concept of ‘One Size Fits All’ when it comes to breast cancer. God Bless her for doing that research. And bless you too for bringing awareness to these very important issues, cancer and cancer treatments.

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