Radiation
Radiation is a kind of treatment for cancer that uses beams of high intensity energy to kill cancer cells. Radiation can be used in both early stage and metastatic breast cancer. When it is used as treatment for an early-stage breast cancer, radiation is used to prevent a recurrence and may happen every weekday for 3-7 weeks and be used in combination with other forms of cancer treatment, including surgery and chemotherapy. For people with metastatic disease, radiation is used to alleviate symptoms, and may be used just once or daily for a short time. Many factors influence decisions about whether to prescribe radiation as part of a treatment plan. These include other treatments already received (e.g., mastectomy or lumpectomy); the size of the tumor(s); whether lymph nodes are involved and if so, how many; and whether a cancer has estrogen (ER), progesterone (PR), or HER2 receptors, each of which influences how the cancer is most likely to grow and what treatments may be most effective.
In this topic summary, we explore people’s experiences with radiation, including how it fits in the context of other treatments, what it is like to receive radiation, some of the physical and emotional effects of the treatment, and ways of coping.
One Step in a Treatment Process
Many people we interviewed had experienced both chemotherapy and radiation. Most said they found radiation “easiest to tolerate.” As Ronnie put it, “the actual treatment doesn’t affect you very much.” Physical experiences were frequently described as “not so bad,” or “a walk in the park” compared to chemotherapy because there were fewer side effects. Asante, however, reported that her radiation ended early because she “was getting sicker from the radiation than… from the chemotherapy.” Other participants described the emotional experience of receiving radiation, which could be lonely, overwhelming, and difficult because, as Janice put it, you have to “expose [your breasts] to everybody.”
Victoria found that radiation did not zap her energy like chemotherapy.
Victoria found that radiation did not zap her energy like chemotherapy.
After radiation, you get home and just rest for an hour. And I would get up, and already would feel like doing something, to go out. I don't know, it was different.
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I felt more like going out and to keep going. But for me, that was, that was mild, the treatment. It's hard, but not as much as like, chemotherapy.
Después de la radiación llego a casa y solo descansaba una hora y me levantaba, y ya me sentía con ganas, con ganas de, hacer algo, de pasear. No sé. Ya era diferente.
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Ya con las radiaciones ya me sentí con más ganas de, desalir y de seguirle. Bueno, para mí fue eso ya fue muy leve, el tratamiento. Es pesado, pero ya no 506es tanto como la quimioterapia.
For Nikki, radiation treatments felt more isolating than chemotherapy.
For Nikki, radiation treatments felt more isolating than chemotherapy.
It was interesting. I remember my first radiation treatment; I was laying there. You know and they did a fantastic job. They talked to me. I picked out some Norah Jones music, and we were cracking jokes and laughing. And then they explained the whole process. I'm like, “just tell me what's going to happen if whatever.” So, I was ready. And then everybody leaves the room. And I was like, ‘it's really quiet. It's really lonely.’ And I was like, ‘ I like chemo better, because at least like my husband or my dad or my friends were in the room. People would stop by on every treatment. Like we have a good time.’ And I was like, ‘this is super lonely.’ So, then I got to the point I was laughing because I would just keep talking to the people that were doing radiology. And we would just talk. Or I'd be singing. And then they'd be like, “[NAME] you're tapping your foot. Stop. Stop keeping—stop keeping rhythm. You're moving.” And I was like, “sorry.” So that was kind of different. I didn't expect it to be—feel so lonely during the radiation.
Janice found radiation treatment to be emotionally harder than chemotherapy.
Janice found radiation treatment to be emotionally harder than chemotherapy.
The first time when I went in. My sister came to meet me, and I didn't know she was coming. She came to be with me at the waiting area, and that was when I met with the oncologist and we spoke with him. And then when I went in for my first time, she wasn't there. I was there alone. And they put you on—in that machine, and they slide you back in. And I just got overwhelmed. And the tears just came.
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It was difficult. It was really, really difficult to have. And afterwards, I said, well, you know, "I could go to Mardi Gras and expose my breasts now because I've exposed them to everybody." You just show them to everybody, and they write on you, and they put these stickers all over you and everything. It's like your body it's like an extension of you. And it's not yours anymore; they take it. And it's really difficult. Difficult to kind of like hold on to yourself and try to come out through that period.
Radiation can be used at different points in the sequence of cancer treatments. For cancer that is not metastatic, radiation is often done after surgery and chemotherapy, but before hormone therapy. Many people we interviewed experienced radiation as the final stage of a long “journey” through “active” treatment.
For Carrie, radiation was the final step in a year devoted to treating her cancer.
For Carrie, radiation was the final step in a year devoted to treating her cancer.
By the time you do the biopsies and get your surgery and then heal from that, and then you start chemo and then you heal a little bit from that, and then you start radiation, and then you heal from that, and then you start the tamoxifen, it's pretty much a year.
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That treatment was really grueling. Surgery, chemo, and radiation, that was a lot. That was a year of treatment.
Those who were told by their clinicians that they did not need radiation felt grateful, since this shortened their time in treatment and made it less likely they would have complications or need reconstructive surgery. When doctors did recommend it, however, many patients saw it as an important part of the effort to do everything possible to reduce future cancer risk – or, as Victoria described it, to have more “opportunity of life.” This also meant that stopping radiation could feel like losing opportunities for the best outcome. As Asante put it, having to discontinue radiation treatment “was scary….I wanted to finish.”
A few people we interviewed questioned whether the radiation treatment suggested by their clinicians was right for them. When June’s oncologist suggested radiation, she responded “absolutely not. I wouldn’t have radiation. Find some alternative.” Others were interested in carefully assessing the benefits, discomforts, and risks associated with radiation treatment.
Janice was at first undecided about radiation, but a computer model helped her choose.
Janice was at first undecided about radiation, but a computer model helped her choose.
So, I met with the radiation oncologist. And he, of course, was giving me this big—what I felt was a big pitch for the radiation, you know. Why you need to do it, and how often—and with my background and what I had, he suggested that I needed 20 sessions. And I said, "What? 20 sessions?" And they were, "Well, why not? Why not?" You know, "What's the problem?"
And I said, "Well, you know, I'm already taking a lot of vitamins because I'm running with my issues of just trying to have energy. And I'm already at a low energy level. Then now this radiation, from what I read, could really push you into fatigue." And I was concerned about that. So, we went back and forth and back and forth about whether or not I was going to do it.
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I said, "Isn't there something that we can do to help me with this decision?" And they said, "Oh, yes. There's something called DCIS Decision RX." So, I said, "Oh. Okay." So, then they all decided that I needed to, I could, go through that process. And so, I said, "Okay, well, then I'm off to [LOCATION]." So, I went off to [LOCATION] to a conference. And during that period, they were doing whatever you have to do to get the answer. And I got the call while I was down in [LOCATION] that my score indicated that I needed radiation. So, I said, "Okay. I'll go with that."
The Radiation Routine
The number of radiation treatments people have can vary a lot. Many people we interviewed described what it was like to have several dozen radiation treatments spread out over a period of weeks. Becky told us that she had radiation “29 times…so basically six weeks, five days a week.” Amber had 33 rounds. Janet B., 40 treatments. Although the appointments are frequent, they can be quick: Ronnie said that though each appointment took about half an hour, the treatment itslef takes “just five minutes or so. The actual radiation is like a minute, or 30 seconds, or something.” For some people, travel time to and from the treatment site added substantially to this time. Janice found that she could not do much else but manage her treatment on days she had radiation. Some also described the hassle and cost of parking as burdensome.
For Kawanna and her family, radiation treatments posed logistical and financial difficulties.
For Kawanna and her family, radiation treatments posed logistical and financial difficulties.
My concern at that point was, all right, we're running on one income. Between the gas and the car and having to, the alternate, like, all of these things play a part. And these are things that are also weighing on me. And it might seem small, but these are all things that-, that play a part. The kids finish school at a certain, oh, and on Wednesdays, at a certain time, and, you know, so, I can't have treatments those days. But the doctor's not in this day and this day. All of these things weigh on the patient.
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There were some times where I-, you know, [LOCATION], there is no parking, especially where the major hospitals are. So, there was days where my husband and I were paying for parking. That's $20, $25 sometimes, and that's just for a few hours, and even $15 for, because radiation, it goes very quickly.
People reported it was hard to return so frequently to the hospital for radiation. They addressed this problem in different ways. Kawanna made use of a ride service provided by the local chapter of the American Cancer Society. Janice got rides from an Uber service covered through her insurance. Other people got help from family and friends.
Side Effects
One common side effect of radiation is fatigue. Fatigue can be at the worst in the few weeks after radiation ends, but usually starts to improve after that. Many people we interviewed said they bounced back quickly from each episode of radiation treatment. Several people, however, found radiation treatment “was exhausting,” not just because of the physical effects, but also from the stress of having to go to treatment every day for weeks on end.
Amber describes her exhaustion from the start of radiation treatment.
Amber describes her exhaustion from the start of radiation treatment.
I was tired. In the beginning, I was extremely tired. It was exhausting just because every single day you had to go drive to the cancer center and take your clothes off, have radiation, put the clothes back on. And so it was just, it was exhausting.
Another common side effect of radiation is red, peeling, and/or painful skin. Over time the skin heals, but there can be longer-term changes in its color or texture. Some people develop scarring or tightness. Because the amount of exposure to radiation varied among people we interviewed, so too did its effects on peoples’ skin. For some, the impact was minor: as Victoria put it, “it was in the last radiations… the burning of the skin came. But it was very mild, honestly. It wasn’t a lot. I got something like bumps.” Others experienced side effects more like a “sunburn,” which often lasted for several weeks after the radiation was complete but could be managed through careful use of special skin creams.
Steven had extensive skin pain, which he managed with skin creams.
Steven had extensive skin pain, which he managed with skin creams.
You get like a sunburn where the radiation is being directed on your chest and on, on your upper back. And it takes a couple weeks after radiation stops for that to start to subside. Because you still have been exposed to all that radiation. And oh, it's not like, “OK, we stopped yesterday, so today it’s going to be perfectly fine.” It takes two weeks for the radiation to start, you know, losing its effect. And then it took probably a couple weeks after that for, you know, the redness to disappear. My radiation oncologist said a lot of people actually get sores, open, that ooze fluids. Mine didn't get that bad. I was really careful about using really good skin creams on all my radiated areas multiple times a day. That made a huge difference in how I reacted to the radiation treatments, and I think how quickly I recovered as well.
Other people experienced upsetting “burns” or skin lesions, particularly as their radiation treatments extended over time. Becky described hers as “pretty awful.” Amber had “radiation burns up through my back. So, it was visible to others. And I had, you know, some people went, what, you know, what's that on your neck? And, you know, sometimes I'd have to give that explanation… [that] it's from radiation.” Others described additional side effects from radiation.
John experienced a variety of physical consequences from the radiation treatment.
John experienced a variety of physical consequences from the radiation treatment.
It took a lot more out of me than I thought. My lungs were damaged a bit and I did have the pneumonia as a result of the radiation. They've healed pretty well. But yeah, I had a little bit of fatigue. Of course, the burning, and it was very - and, you know, they put you on a bed and they have this device. And they really concentrate it in that one area. They're really targeting, and yes, your skin gets burned.
Coping during Radiation Treatment
People told us about several tricks they used to deal with the effects of radiation. Most reported that the moisturizing creams and lotions recommended by their clinicians were at least partly effective in helping their skin. Others described creative ways of getting through their radiation routine. Becky reported that she used her radiation sessions to “take a little snooze.” Amber explored the “secret passageways” of the hospital she went to every day for treatment. Michelle “occupied [her] mind” with books on tape while driving back and forth from the radiation center.
Nikki focused on her children instead of on her painful skin lesions.
Nikki focused on her children instead of on her painful skin lesions.
That was a little rough towards the end. I think everybody kind of feels that piece, you know, just literally, just blistering, everything kind of coming off. So, it's painful. I would wear my dad's t-shirt. He was a big guy. So, I would walk around the house hunched over so nothing touched my skin, even the cool pads would take the skin off. So, it was just really painful. But again, it was, you know, the kids would come home. And “Hey, can you help me with my homework?” “Yup.” So, we would all kind of sit hunched over and do homework. And just, you know, the skin was going to come off. You were going to have blood. Things were going to hurt. But if I focused on them, like then it would ruin everything else. So, I'd never really kept focusing on it. You know, we just kind of kept going on with life.
Staff involved with radiation treatment often helped people we interviewed in various ways. Nikki was able to make connections quickly. “I remember my first radiation treatment,” she said. “I was laying there. You know and they, they did a fantastic job. They talked to me. I picked out some Norah Jones music, and we were cracking jokes and laughing. I just kind of kept talking to people. So that was not so bad.” Others also emphasized how “wonderful people” at radiation centers could made their experiences more bearable.