Chemotherapy is a drug treatment that targets the cancer but it does have important side effects. It is injected into a vein over multiple sessions, and usually given after surgery for breast cancer. The goal is to destroy any remaining cancer cells at the tumour location, as well as cells that may have spread to other parts of the body. Chemotherapy helps reduce the risk of recurrence. For very large breast cancer tumours, chemotherapy may be given before surgery. The goal of chemotherapy before surgery is to shrink the tumour so that it is easier to operate on. This is known as “neoadjuvant chemotherapy”. Not all women we interviewed received chemotherapy; some women, for example, underwent a lumpectomy and radiation therapy. In this page we present the experiences of women who told us about their chemotherapy treatment.
In the beginning... we hear about people on chemotherapy. You think they’re on chemotherapy and they’re hooked up to IV for all this time, like somebody’s doing chemo. But you’re in for one day or two days, the day before you need blood work done and the next day you need to be hooked up for a couple hours or I don’t know, maybe it was the whole day. I think people believed that your off a week of chemo and then the 2 weeks that you’re not on it. It’s the week of taking oral drugs and leading up to that 1 day on the IV for me. So I don’t think I knew. Some people when I’d talk to them realized that that’s all it is. It’s just that 1 day a week that you’re over to the hospital hooked up to IV.
Oh going to (city in BC) was so hard. The chemo itself, preparing for that, having a sense of humour about it. Our old hospital had a very small chemo department. It was an old hospital room with the 4 beds that they transformed and it was pretty full of storage shelves but did they ever make it cozy.
Tina and Laurie considered chemotherapy but decided against it. Tina felt she would not be able to deal with it physically.
And currently in Quebec if you have no nodes positive they will allow you to get the Oncotype DX* test which tests your genetic components in your tumour. Then based on your Oncotype results, you can see whether it’s beneficial or not to do the chemotherapy.
Initially when I had gone for my follow-up, with my surgeon, she had mentioned, you know, the fact that I would likely have to do chemotherapy based on the histology of the sample. My mom had not done chemotherapy for her first round when she had breast cancer. So it was very... and she was very healthy at the time and had no concerns about any recurrence.
For some women chemotherapy was less difficult than they expected, such as for Melissa and Sirkka, who had a few sores in their mouths but not a lot of nausea. Medication for nausea helped several women.
The first session is really, I think, the hardest because you don’t really... they try and explain to you what the side effects are and what could happen and what’s going to happen but I think it’s harder than you can imagine the first time. And there’s, I don’t normally take a lot of pills and I think I was taking 6-7 pills, twice/day, plus extras just to keep on top of the nausea and the constipation. There are a lot of side-effects of that first round of chemo.
It was hard to get control of it that first time because you don’t know. It got a little bit easier. So, that was every 3 weeks you had to do that one and it took you a good week to feel kind of normal and a lot of pills. I was taking a lot of pills for that time just to keep going.
Interviewer: So mostly pills to kind of help you with the side-effects of the chemo?
Yeah that’s it exactly, so there were... but then some of the pills that you were taking had side-effects, so you had to take more pills to try and counteract that. If you tried to not have any of the pills it was awful, it was awful.
Interviewer: Did you try that the first time?
I did that the first time. I did it because I’m not a big pill ... I don’t like to take a lot of medicine. Then when I went in the second time, I was telling them. They said "Just be honest about what you’re doing, what’s happening, what your symptoms are, because we can’t help you unless you tell us exactly." So when I told them they said "Okay you’re going to have to let that go and just take the pills because we can help you but only if you take it the way that we’re telling you to take it." So after that I followed it carefully and it was much, much better.
My first experience was extremely exhausting because it was fighting, it was trying to figure out what was going on. I was very disillusioned with, with how bad the healthcare system was and then I was lucky, I had a great social worker. The social worker allowed me to put things in place so that I could switch oncologists.
So here in the city we have one cancer agency and so my biggest fear was if I switch oncologists will my care be minimized or downgraded because now I’m considered a troubled patient or a difficult patient. And so again, it goes back to these patients who don’t realize, if they’re not connecting with their oncologist, it’s okay to switch oncologists. You may not connect with them for numerous ways but if you don’t trust your oncologist and if you can’t communicate with your oncologist get a different oncologist. It is so important that you go through this journey supported and feeling that you're not second guessing every single thing that the oncologist is doing. So that put a very bad taste in my mouth for the whole system as it is.
This new oncologist was a lot better and we finished, got my, got everything adjusted in terms of dosage and different things.
White blood cells
Some women had reduced white blood cells because of chemotherapy and had to be treated for this. Christine, for example, was admitted to the hospital as her blood count went down to zero; she was advised to take Neulasta to help her white blood cell count recover. May-Lie had to have Neulasta injections and described the intense pain this caused; she took codeine for the pain.
One, yeah, every 3 weeks, and I was very lucky I think from what other people experience. I certainly did have a few days where I felt really awful. One of my biggest complaints I think or my biggest hardships of it were the nausea and the pain. The pain was caused from a needle that I had to give myself.
Women mentioned the more common side effects of chemotherapy: hair loss, fatigue, weight changes, loss of taste and appetite changes, aching bones, nausea, tingling toes or fingers (neuropathy), black nails or loss of nails, painful or restless legs, loss of concentration, mouth and vaginal sores, and bad moods or aggressive feelings. Some women also experienced other side-effects that were less common, such as Malika's burning sensation in her body and her tears. May-Lie had a strong urge to be active and hospital staff called her a 'walkaholic'. Ginette had such mouth pain that she had difficulty eating. There was considerable variation in the type and intensity of side effects that women described, and in their reactions to them.
I was very fortunate with the chemo because a lot of people said there’s a lot of side-effects. So mostly, first of all, I didn’t feel too much nausea. It was there constantly but because I used to sleep so much it didn’t affect me as much and because I took my pills so much on time. Consistently, 6 o’clock in the morning, 6 o’clock in the evening that really helped me.
Nadia (B) mentions in the clip that nails can turn black, it happens in some cases that women have discolored nails. Undergoing chemotherapy treatments can also cause infertility or an early onset of menopause. Young women had to therefore decide, before chemotherapy started, if they wished to undergo cryo preservation (egg freezing) to increase their chances of being able to get pregnant after the treatment. You can read more about this in Preserving fertility.
A common side-effect of chemotherapy is the loss of hair. Women described losing their hair in different ways and times. For some, this started a 10 days after their first treatment and for others it started around the 3rd week. Some women gradually lost their hair and others described the process as 'fast and furious'. Iceni for example remembered a clump of hair blowing away in the wind during a storm. Debbra's hair only thinned following her first treatment. Another thing sometimes noted was the remarkable loss of all body hair, including the hair on arms and legs, eyebrows and eyelashes, pubic hair but also the hair in their nose.
Women made very personal choices around anticipating hair loss. Some women shaved their hair before it started to fall out and others tried to keep their hair for as long as possible. Julie decided to try many different haircuts before taking it all off; Melissa donated her hair to an organization that made wigs for children with cancer; and Christine ended up participating in a fashion show just after her head was shaved which was, in her words, ‘a real gift’.
Yeah, hair loss was probably the hardest thing for me especially because I used to have long hair down to the butt. My hair was really, really nice, everyone... I used to curl it, everyone used to love the hairstyles I used to do. At 20 something years old, as you know, as a woman, hair is super important to you.
I went through chemo, like I said it made my feet numb. After the second treatment I couldn’t walk very well for a while. My feet are still numb, it’s about 5 years, but my balance is much better. I have to make sure that I wear flat shoes, but I’m good. I’ve lost some of my memory and I’m not sure if that’s from the chemo or radiation. I had 25 radiation treatments and I am fine. I lost my hair. My biggest fear was that my dad was bald and I was afraid that I would wake up one night and go in the bathroom and think it was my dad staring back at me, but I didn’t look too bad. My daughter was here and one day we were sitting at the table, I threw a towel or something over my shoulder, she said "Oh my God, you look like Ghandi." And so I got her to take a picture of me, I sent it to my friends by e-mail saying "Ghandi wants to speak" and I told them a little thing and I put this picture on there. I, you know, I wore a couple wigs, I became a brunette for a while and that was something different. My husband wasn’t sure if he liked that, he had said "Don’t wear that when you’re with me." We went out one night for supper with friends and the waitress was a friend of one of my daughters. She was talking to (name husband) but she never said anything to me, and I thought, well, she didn’t recognize who you were. And I said who I was and she said "Oh I didn’t recognize you, I thought (name husband) was with someone else" and my husband said see I told you. So that was quite funny I thought.
It was hard because I wouldn’t wear a wig so I had no hair. I went back to work and I waited on my customers, because I work in retail, and a lot of the times they didn’t know who I was. But at the same time I would have women come up to me and say "Oh!
Donna says "I'm one of the few people that lost weight on chemotherapy it's the worst, worst diet in the world." Most women that we spoke with gained weight during treatment, but felt that there were several contributors, such as steroids, reduced activity when feeling unwell, changed appetite, and early onset of menopause. This was a sensitive issue for some women who felt uneasy with their weight gain. Women also described difficulties eating which led to changed eating habits – eating smaller, more frequent amounts, and eating before treatment. Shelley loved eating more smoothies. Please visit Physical activity and diet changes to read more about this. Julie felt like she was in another body. Others were happy to have gained weight as expected.
Less common as a side effect but noticed by some was 'chemo brain'. Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction. Melissa and Christine described chemo brain as losing their words, an inability to say certain words, or just a 'duh' moment. For Melissa, the words would suddenly pop up later which has affected her confidence a little. Iceni initially thought she had Alzheimer's as she would constantly forget things.
Even chemo brain, that was something that you read a little bit about. I did not anticipate... I thought "Oh, I won’t get chemo brain, I’m always reading, I’m always doing this." I couldn’t remember the word vacuum, I was describing the machine that picked up dirt off the floor. Little things that you take for granted every day, I couldn’t put together in a phrase...
Different things helped women to cope with chemotherapy and its consequences, but having company and staying as active as possible was a common theme. Having company during the treatment was important for Shelley and helped her keep calm. Sirkka loved going out in the fresh air even when she was feeling really sick and worked on getting her 'mind over matter'. Carol's children helped her to keep going. Christa tried to reduce the exposure to her unborn baby and belly by uncovering it and tried to keep her belly cold. Shelley describes a loss of her fine motor coordination and did things like playing with playdough to get that back to normal again. Melissa thinks she might have pushed herself a bit too hard in continuing her normal routine; likewise, Jeanette's nurse told her not to push so hard after she told her proudly that she did a 6 km hike. Please visit Work and finances to read more about how women combined work and chemotherapy. Keeping a sense of humour was also important to many women we spoke to, you can read more about this in Coping strategies and Positive effects on self.