Chemotherapy
Treatment options for breast cancer include surgery, chemotherapy (possibly combined with targeted antibodies such as trastuzumab aka Herceptin®), radiation, and hormone (aka anti-estrogen or endocrine) therapies. Many people with breast cancer receive some combination of these treatments, depending on cancer size, the number of lymph nodes, and whether a cancer has estrogen (ER), progesterone (PR), or HER2 receptors – differences that change how cancer grows and what treatments may work best.
Chemotherapy
Often known as “chemo,” chemotherapy is a form of treatment for breast cancer. It kills fast growing cells (such as cancer cells) but is not a targeted treatment, meaning that it can also kill other fast growing cells in the body. Chemotherapy can be used in early-stage breast cancer to help prevent cancer from spreading or returning; it can be used in metastatic breast cancer to slow cancer growth and prolong life. It can come before surgery or after.
Dr. Amye Tevaarwerk, University of Wisconsin-Madison, describes the impact of chemotherapy on the body and the factors considered in prescribing it.
Dr. Amye Tevaarwerk, University of Wisconsin-Madison, describes the impact of chemotherapy on the body and the factors considered in prescribing it.
Usually when clinicians or patients when they say the word chemo or chemotherapy what they usually mean is a collection of drugs that typically in some way affect fast growing cells and they are not very targeted in any shape or form. They kill fast growing cells whether those are normal cells or cancer cells and because they are not targeted and because they may kill as many normal cells as cancer cells, they often come with a lot of significant side effects for patients.
Low blood counts are a common side-effect of chemotherapy. Hair loss, right? That is a big one. Sloughing or sort of where the cells of the gut die off and then like kind of come loose and you get mass or you get loose stools, those are all common side-effects of chemotherapy. You can also see things like neuropathy with repeated doses, where the long nerves, the fingers or toes are impacted more than other areas and we start to get numbness and tingling, those are all sort of like normal body parts being affected by the chemotherapy as well as hopefully the cancer cells.
If someone is in a curative intent population, where they are going to have surgery to remove the cancer in the breast or they have already had it we make that decision based on a couple of factors. So, usually, the first thing we are looking at is what is the risk of disease recurrence elsewhere in the body….
So we know from very, very long study of breast cancer right, stretching way back over decades that when all we did was surgery on the breast some fraction of women would seem to do well, and never have their cancer show back up. And another group of women would have a return of their disease, sometimes locally in the breast or the chest wall area where it where it was originally found. But, also distantly in the bone, the brain, the lung, the liver, what have you right/ And so, the way this theory works is that we know that for every portion every woman or individual we see who has cancer in the breast. Some fraction of them will also have microscopic disease outside of the breast that spread to other areas. When we say microscopic what we really mean is that it's below the level of what we can see with current scans. Right? We don't necessarily have good tools for detecting it. How high that risk is for metastatic disease is usually driven by the size of the cancer in the breast, the larger the cancer is the higher the chance that there has been microscopic spread. The number of lymph nodes involved, the more lymph nodes that are involved, the more we are worried that that cancer has been traveling. right out of the breasts into microscopic-ly other areas of the body and then somewhat the grade and the receptors right, so the higher the grade, the more risk.
This summary explores what it is like from patients’ points of view to have chemotherapy for breast cancer. People told us about how they coped with chemotherapy, and its emotional and physical effects on their lives. Their experiences revealed just how varied chemotherapy can feel in the severity and duration of side effects, in the challenges it creates in everyday life, and – as the clips below illustrate – in knowing what to expect.
Anticipating Chemotherapy
Many people we spoke with were anxious about chemotherapy; others felt a sense of relief or were eager to begin so they could “get out of the victim mode” and feel more proactive. June said she was “scared,” but got through it. Kim noted, “I wasn't that concerned about the surgery. I was really frightened about chemo, how I was going to feel. I had visions of being really sick and debilitated.” For some, the most frightening part was thinking about toxic chemicals being fed into their bodies.
Maria H. was most fearful when she first began chemotherapy.
Maria H. was most fearful when she first began chemotherapy.
My first chemotherapy was, well, I found myself surrounded—my husband went, my children. I was afraid because I didn't know what my body would feel. I was terrified to see that the nurse came in with her gown, her mask, gloves, and the bag said toxic, dangerous. And I was saying, "Ah. She can't touch it, and this is going inside my body. Oh my God, what is going to happen?" I had always heard that, the way that it affects—to kill bad cells, also the good ones. And, well, a terrible fear.
Mi primera quimioterapia estuvo, bueno, me vi rodeada--fue mi esposo, mis hijos. Tenía miedo porque no sabía mi cuerpo qué iba a sentir. Me aterraba ver que llegaba la enfermera con su bata, su cubre-bocas, guantes y la bolsa decía tóxico, peligrosa. Y yo decía, ah, ella no lo puede tocar y esto va dentro de mi cuerpo. Oh, dios mío, ¿qué va a pasar? Siempre he escuchado que, así como afecta, a mata células malas, también las buenas. Y bueno, un miedo terrible.
Chemotherapy motivated Janet S. to get out of “victim mode.”
Chemotherapy motivated Janet S. to get out of “victim mode.”
And I thought, “Janet, you've got a lot more fighting to do. You've got a lot more ahead of you. And you better damn well get yourself out of this funk so you can take on whatever you got to do to get on the other side of this.” And that truly is what started pulling, I kind of got out of the victim mode and crossed over into the fighter, survivor mode, and that, that is where I have stayed ever since.
Some of our participants worried because they didn’t know how their body would react to the chemotherapy, or how long side effects might persist. As Debbie noted, “there’s no way of knowing ahead of time” how it will go, because “everybody reacts differently.” Others felt sure the impact of chemotherapy would be temporary, and this helped them cope as it unfolded.
Ginny worries about the potential for permanent hair loss.
Ginny worries about the potential for permanent hair loss.
I lost all my hair on week two or week three of the first chemo.
I think being without hair is surprisingly impacting of your self-esteem. I'm not a shirker or a, I can't think of the right term. But a shy person. So I went out and did whatever I was going to do, wearing all my little knit caps and things like that. But it does make you self-conscious.
That's a, that’s a real hardship. And to find out that that was a known side effect that could be permanent, that's big to me. It would almost make you rethink the chemo. Not me. I think I would have done it anyway. But I used to have very thick, coarse hair. I don't anymore. And I've lost everything I had right here. And so it impacts how I look, how I feel about myself, how I wear my hair, how I can wear my hair.
Janet S. felt sure the effects of chemotherapy would be temporary.
Janet S. felt sure the effects of chemotherapy would be temporary.
I had to have four rounds of chemo. That is not a lot. You know, I hear of people having a whole lot more. It wasn't easy. It's not something that I would want to do every day by any means but, when you look back on it, it wasn't that big of a deal. It sounds so simplified and, I don't mean to be disrespectful to myself or anyone that has cancer when I say this because I feel like I came off easy. I truly do feel like I came off very easy compared to what a lot of people go through. Cancer for me was a bump in the road. It was a very significant bump in the road. It was a tough bump in the road but, it was just a bump in the road. I had a life before cancer and I have a life after cancer. And the things that I had to go through to get on the other side of this diagnosis, like I said, weren't things that I would want to do every day but, they were temporary. They were short-lived.
Changes with Chemotherapy Over Time
People we spoke with emphasized how hard it could be to predict how experiences with chemotherapy would evolve over the course of their treatment. For some, initial experiences were difficult, but things improved over time as their care team adjusted how chemotherapy was delivered or shifted to an alternative mix of drugs. In other cases, patients themselves made adjustments. Several people turned to other sources of professional help. For example, Debbie found acupuncture useful. Kerry discovered that fasting (while staying hydrated) the day before starting each new course of chemotherapy helped reduce side effects. Others learned how to manage the side effects of chemotherapy with additional medications.
Zulma initially experienced pain with chemotherapy.
Zulma initially experienced pain with chemotherapy.
Sometimes, well, the chemotherapies have a reaction at the moment that they give it. And it gave me a reaction the second time, and it made me afraid, and I didn’t want to take them. I don’t know. In that moment, I felt like I was going to die. I felt something very awful. Suddenly, I started to see, like, little black stars. I felt that my arm was burning, and I felt like my head like, was swollen and was going to explode
---
My daughter was there. She saw immediately that I had a reaction, and quickly she told the nurse. The doctor arrived and then asked me what had happened, and I, well, told her what I felt. So, she spoke with the nurse, and then they did the process again, but this time more slowly.
Entonces, sí eso fue, siento que fue lo más difícil para mí, el proceso de las quimioterapias. Y más que me dio miedo, porque, a veces, bueno, las quimioterapias hacen reacción al momento de estarlas poniendo. Y me hizo reacción la segunda y me dio miedo, ya no quería tomarlas. Yo no sé. En ese momento, yo sentía que me iba a morir. Sentí algo muy feo. De repente, empecé a ver como estrellitas negras, sentí que me quemaba el brazo y sentía como que mi cabeza, como que todo se me estuviera inflando y que iba a explotar.
---
Y sí estuvo mi hija ahí. Ella vio inmediatamente que me hizo reacción y rápido le habló a la enfermera, llegó el doctor y ya, me preguntó que qué había pasado, y yo, pues le dije lo que sentí. Entonces, ya hablo con la enfermera y ya me volvieron a hacer el proceso, pero ya más lento.
After steroids kept her from sleeping, Ginny changed when she took them.
After steroids kept her from sleeping, Ginny changed when she took them.
There were just things I learned to do with the medications to reduce the impact. And I would look it up. For example, the first chemo, you take a steroid. The day before, the day of, and the day after. And that kept me up all night. And so, I started so that, next time around, I took it at 4:00 AM each of those days. So, I didn’t have the, and I think I took a half a sleeping pill or something at night. So, I didn’t, and I had to, I had to Google that to figure out that it was that steroid that keeps you up. And I've talked to other people who had the exact same experience.
Some people we interviewed found they felt worse the longer they were on chemotherapy. For example, Alice, who was treated for breast cancer twice said, “the second time…well, the chemo was just a lot harder because I had already gone through it once.” In some cases, the worsening side effects delayed planned chemotherapy doses. Kawanna, for example, said she had “calculated everything” in terms of the original plan, but then there were some issues with side effects that caused her treatment team to give her “a little break” and the timing was all changed.
For Sharon, the side effects of her chemotherapy grew increasingly hard.
For Sharon, the side effects of her chemotherapy grew increasingly hard.
Chemo was not fun. Oh, my god. The first one wasn't so bad. They gave you anti-nausea meds in your feed, so it's not like the movies where you're puking your guts out. But I didn't feel great.
---
By number three, even the doctor I work for was noticing that it was taking me longer to recover. Number four, I got sick immediately. And my doctor had written me a note for a week off for my chemo, for my chemo weeks. And I kind of chuckled to myself. There's no way I was going to take a week off. But when four hit and I got sick right away, I thought, “Huh.” And when five and six came, I took that week off. I couldn't. I think I slept for 30 hours straight sometimes and still could not have the energy to sit up in my little rocking chair at the time. It was rough. It was rough.
For Steven, chemotherapy was delayed to rebalance the electrolytes in his blood.
For Steven, chemotherapy was delayed to rebalance the electrolytes in his blood.
Because I had so much GI distress, I was draining out all my electrolytes, my magnesium, and potassium, which are really important to your heart health as well. I was only having chemo once every three weeks. But after about the third treatment, I was going in to infusion a minimum of two to three days a week for four to six hours minimum just to get electrolytes put back into me because my magnesium got really, really low, and they were pretty concerned. And at one point, they actually delayed one of my treatments by a week. And instead of giving me a treatment, I got a blood transfusion, which was a positive thing. I mean they don't do transfusions lightly. But I mean, there's a lot of beneficial effects, and I certainly felt stronger after I got my two units of blood.
Coping with Chemotherapy
People we interviewed described numerous personal strategies for coping with both physical and emotional effects of chemotherapy. For many, staying active and focusing on relationships helped a lot. Sharon gained strength from people in her workplace who were consistently “thinking of me and loving me and supporting me.” A number of people emphasized the importance of parenting as a counterbalance to chemotherapy; As Victoria put it, “one gains strength for the children, so that they don’t also fall.”
Nikki’s children kept her going.
Nikki’s children kept her going.
So, I had my first chemo treatment. And I was probably knocked me down for two to three days that first time. I got pretty sick. And I remember my son would come downstairs. And he would knock on the door. And he says, “Mom, are you doing cancer today, or can we go play basketball?” And I said, “I don't want to do cancer today. Let's do basketball instead.”
So, to him, it was something very easily that I would either have cancer one day, and I would stay in bed, or I would just go have fun with him. And so, I'd say, “give me 30 minutes. And we're not going to do cancer today.” So, it was just amazing to see his perception.
And I know people have asked me, “Oh—I don't know how you did it with little kids.” And I said, “I don't know how you do without kids. I don't know how you do without family,” because they just, especially that young, he just, you know, they would just, all of them would keep me going. They had something to do. They had a dance. They were growing up. They needed their mom. So, it was pretty interesting.
Asante kept busy with many things.
Asante kept busy with many things.
How I got through chemotherapy, I exercised the whole time; I worked full time; I'm married, so I took care of my son and my husband. I didn't stop because one of the things that my doctor told me was there is no benefits to laying around when you have breast cancer. He told me to stay as active as I possibly could.
A number of people developed specific strategies for making chemotherapy less of a burden and interruption of daily life–for example, by paying careful attention to the calendar and scheduling important personal activities on days they knew they would feel less drained. Sally timed her treatments so her husband could take care of the kids. Asante organized her work and chemotherapy schedules so as to not be working when she felt “down for the count” after treatment.
The people we spoke with said that emotional balance is another key element of coping with chemotherapy. For Kerry, this involved reminding herself “that there was going to be some end in sight” so that she would not feel anxious about the multiple rounds of chemotherapy required. For others, it meant taking good care of themselves, or allowing themselves to feel whatever emotions come up.
Victoria drew strength from allowing herself times to feel sad.
Victoria drew strength from allowing herself times to feel sad.
The truth is, some moments were fine. And one gains strength for the children so that they don't also fall. But yes, I-, ah-, always said to him, "Take the children out." And in that moment, I would let my sadness out. I would go in the room and, well, vent. I would cry because sometimes of the nausea, vomiting, and—honestly, I didn't want the children to see me in all of that. So, it was where I would say to my husband, "Take them to the park. Take them to the cinema and leave me here alone. I want to rest." And that was the moment that I could let it out, going into the room and crying. And after crying, I felt strength. Then I said, well, now I got it all out. And then when my children would come, I would be fine.
Bueno, había momentos que estaba bien. La verdad había momentos que sí 381estaba bien. Y uno se hace fuerte por los hijos, para que no ellos también decaigan. Pero sí, yo—este—siempre le decía a él, saca a los niños. Y en ese momento yo desahogaba mi tristeza. Me metía al cuarto y, pues, ahí desahogaba todo. Lloraba porque a veces había náuseas, vómitos, y la verdad no quería que los niños me vieran en ese estado. Entonces fue donde le decía a mi esposo, llévatelos al parque, llévatelos al cine y déjame aquí sola. Yo quiero descansar. Y era el momento en que yo podía desahogarme, entrar al cuarto y llorar. Y después de llorar sentía la fuerza. Ya dije, bueno, ya saqué todo, ya llegaban mis hijos, yo estaba bien.
Ginny pampered herself.
Ginny pampered herself.
Part of the regimen is, whatever makes you feel good, give yourself license to do it. For me, like I said, the first round of chemo, I felt kind of like I'd been beaten up with a bat. I just ached.
---
And so for me, getting a massage. And I think I got chiropractic in there, too. And so for me, getting a massage. And I think I got chiropractic in there, too. I just had this regular sort of, taking a bath every day. Feeling like I could close work if I felt done in. I didn't take a lot of work off but I gave myself license to lay low if I needed to. And just doing things that made me feel good and didn't tax me. That was my way of pampering myself.
So the advice would be to pamper yourself.
Yeah. Exactly. I mean, you're going through a lot, mentally and physically. And whatever you can do that, that makes life more enjoyable. Yeah. Yoga, massage, anything that’s, a hot tub, anything that's a pamper for you I would recommend, because you deserve it. I mean, you're handling a lot. After the first treatment, I felt like I'd been kind of hit with a plank. I just ached everywhere. I started taking a bath every night. I did, throughout the four treatments, I then did a massage right after each treatment. I just pampered myself.
Experiences with Side Effects of Chemotherapy
Detailed descriptions about side effects of different kinds of chemotherapy can be found at our Resources and Information page. The people with whom we spoke described particular effects–including hair loss, neuropathy (tingling, pain, or numbness in nerves), “chemo brain,” severe fatigue, and changes in appetite or weight–and the varied impact of these experiences on their lives and well-being.
Almost everyone we interviewed shared the experience of hair loss, but the effect of this loss on their lives and identities varied. For some, the loss was no big deal; as Janet S. put it “for some reason, it didn’t bother me...at all.” But for others, being without hair was, in Ginny’s words, “surprisingly impacting of your self-esteem.” Victoria described seeing her bald head in the mirror and feeling “I’m not me.”
For Denise, losing her hair was a visible symbol of having cancer.
For Denise, losing her hair was a visible symbol of having cancer.
I, it was so, I think losing the hair was probably the hardest. And it's so vain. It is so vain sounding. But that's who we are as females. And to lose that, I did not want to go out in public. I know there's different options and stuff; the scarves and stuff, but I didn't, I wanted to pretend I wasn't sick.
A sensation of burning, stabbing or numbness in hands, feet and other parts of the body, referred to as “neuropathy” and caused by nerve damage, can be common with particular chemotherapy regimens. Steve said he experienced numbness “in my fingertips and my toes.” For Asante, neuropathy felt like “someone poking needles in your hand, and then going over it with a feather… It hurts, but it tickles.”
Many people reported feeling “drained” during their chemotherapy. For some people “feeling drained” largely meant physical exhaustion. As Kerry put it, she would be “falling asleep” after dropping her kids at school. Zulma described depending on her daughters to go to the bathroom and to bathe. Others talked about mental exhaustion. For Amy this meant feeling “very scattered” and difficulty focusing, for Casey, being “kind of spacey,” or just not “really on the ball.” Those who reported both physical and mental effects often found it difficult to sort out when fatigue was the primary driver and when chemotherapy might be directly affecting their concentration or memory.
Sally found herself in a “weird zone.”
Sally found herself in a “weird zone.”
I just had no energy, achy, but I couldn’t sleep. So, it was like this just weird zone of walking around not knowing what to do with myself, and not feeling good enough to do anything but not feeling sleepy enough to allow myself to sleep. So, it-it just sort of wore on me.
Kim struggled with both physical fatigue and her own form of “chemo brain.”
Kim struggled with both physical fatigue and her own form of “chemo brain.”
When I look back on chemo, that's what I think. I was tired. I could feel it was a chemical tired. It's a tired that no one can understand if they haven't been through chemo. The kind of tired it is, it's like every cell was, for me, zapped of energy.
---
It's kind of hard to pull apart chemo brain and fatigue too, because fatigue will cause some of the same kind of symptoms. But I know there's more than just fatigue going on.
---
My short-term memory was shot. I was reading the New York Times every day. I had plenty of time for it. But I couldn't remember a whole lot of any. I couldn't remember much about what I read, but I enjoyed it. I remembered a few things, but I just couldn't-I couldn’t remember much of anything. My judgment, I think that maybe because my brain was so tired. I concerned my partner a bit because my judgment wasn't always so good.
Anti-nausea medications now eliminate for most people the previous major side-effect of chemotherapy – having trouble keeping food down after eating. Nonetheless, some people we interviewed talked about experiences with nausea, vomiting, or changes in their weight. Overall, people on chemotherapy tend to gain weight. And that was true for our respondents: Kerry, for example, noted that her experience gaining weight during her chemotherapy was one of “the normal side effects” that her clinicians had told her about. Several of our participants experienced the less-frequent effect of losing weight because “chemo makes everything taste terrible,” or because, as Steve put it, “my appetite crashed.”
After Chemotherapy
The experiences of people we interviewed after completion of chemotherapy were just as varied as their experiences anticipating and undergoing it. Some said their side effects ended quickly and others had them for a longer time. Similarly, some were eager to put the journey behind them. As Janet S. noted, it was “a very significant bump in the road,” but “I had a life before cancer and I have a life after cancer.” Others felt some loss of control, and of community and emotional support, once treatment ended. Ginny developed a “recipe for getting through chemotherapy” to share with others.
When his chemotherapy ended, Casey missed the support he had gotten from people there.
When his chemotherapy ended, Casey missed the support he had gotten from people there.
You, you shut things down. You go to survival mode. You go through the motions. When you're supposed to show up for chemo, you do it. You sit there for five hours. You see people. Whatever it is, radiation, the same thing. You go every day. You're in this routine. And then when the routine stops, and you're done with things, you kind, you, I miss them. I miss the people that I would see every day because they were kind of my support. Because there was other people there also that were getting treatment and getting chemotherapy. And they were nice to you, you know? I mean, not that your friends weren't nice to you, but they were, they were nice. They were pleasant. They understood. That's why they're in that field or in that specialty, that they want to be there.
For Kim, returning to work meant dealing with how she felt chemotherapy had affected her memory.
For Kim, returning to work meant dealing with how she felt chemotherapy had affected her memory.
After I went back to work, I still had the fatigue.
---
It gradually got better, but it made returning to work difficult. I couldn’t remember, as a psychotherapist, I couldn't remember information that well, people's details of people's stories that I might have been able to remember before. So, I relied a lot on notes. People understood that, my need to take notes.