While not everyone we spoke to experienced long-term effects of treatment, many did and, for some, this was one of the most challenging aspects of their experience. Long-term effects were associated with surgery, chemotherapy, radiation and hormone therapy. They included numbness or tingling, especially in the hands and feet; brittle nails and teeth; loss of appetite or sense of taste and mouth sores; hot flashes and joint and muscle pain; weight gain and extreme fatigue. While many women resumed work and daily activities after treatment, some felt that they were not able to function as well as they had prior to their illness. Others said that they still did not feel like themselves even several years after treatment. There was a shared feeling that the long-term effects of breast cancer and its treatment were often not fully appreciated by others.
Physical and emotional recovery from treatment is unique to each individual and some women were pleased to find that they recovered from treatment with only minor or no long-term effects. Christa was one such individual and she considered herself fortunate in this regard: “I made it through and I’m fine now … Some people have problems with their limbs and stuff afterwards and they have to wear like the compression things on their arms and I don’t have any of that.”
Effects on skin and extremities
Some women described specific long-term effects that they associated with chemotherapy and radiation.
The side-effects for radiation, they talk a lot about the skin side-effect and that’s sort of a very temporary thing. Even though it’s still a little bit red, it doesn’t hurt or anything. But the radiation’s going all the way through your body, actually everything in there gets a little bit tender or scar tissue.
When I came back was when I realized that my body is not going back to normal. It’s not going to happen. To this day, 4 years later, I know my body is not normal. I know that and I’ve asked several doctors; I’m released from oncology now, completely, but every time I asked, they told me the same thing. “If you still have those effects now, it’s not going away. That’s not going to get better with time. Joanne, that’s going to stay.” So I have tingling in my hands and feet and my nails are still cracking off all the time. I get this tingling. When I sleep at night, I wake up in the morning and I have to wake my hands and feet up before I get up. The teeth are still really brittle and sensitive and my teeth… several teeth have cracked. I had a really bad one just shortly after chemo. It was that summer when my brother was home. Let’s say it was three or four months after chemotherapy. I am chewing bubble gum. In the summer time I can sit on the deck and read a book, and just blow bubbles for hours and have a ball. Five cent entertainment for 2 hours with double bubble. When I chewed the double bubble, my teeth started cracking.
Loss of appetite and taste and mouth pain
Several women experienced long-term loss of appetite and sense of taste. This had a negative impact on both their physical health and their enjoyment of life.
I don’t eat a lot and plus I don’t have any taste buds. I was hoping, and I’ve asked three doctors but they will not prescribe marijuana. I have some on the side but I don’t smoke it enough because I forget. I’ll lie in bed and think "Oh! I should have a joint" because all it does is... I’ll smoke it and then it makes me tired and I’ll go to bed and have a good sleep. And I find that the first day my mouth is really smoky, the second day I can actually (taste something.) The first time I had one, I couldn’t believe it because I was eating a spinach and feta pizza and I could actually taste the feta and I was so excited that I could actually taste something.
I think I have to get on a pattern where I smoke it more because I have to get my taste buds back. There’s nothing worse than not being able to taste chocolate let me tell you. I still eat it but it does not taste.
Interviewer: So what kind of things can you taste?
Not very much, my taste buds... if I have anything hot, it’s really hot, it burns my mouth. So I don’t eat that. Potatoes, I used to love mashed potatoes, but now, I don’t like them because it’s just fluff in my mouth. I can taste a couple things. I can taste a little bit but I... they don’t taste like they should taste so I don’t know what to say. I’ll be glad when they come back and I can actually say I can taste chocolate or I can taste blueberries or something.
A rare but especially debilitating long-term effect of treatment was mouth sores.
Ginette: So I was not very pretty. I was as white as a sheet. And during many months I only ate…
Janine: A white porridge that I was making…
Chronic fatigue was widely experienced and could, in some cases, dramatically limit women's abilities to carry out normal, everyday activities.
This long-term fatigue which is now being investigated by a lot of researchers, in a lot of countries, because they’re not really sure what the whole syndrome is. I know that it exists. It’s not just me, and for example, maybe 3 weeks ago it just hits all of a sudden. It’s fatigue that says… I can’t get from my den which is, this is a two bedroom apartment, there’s not a lot of room in here.
Effects of hormone therapy
Many women with estrogen receptor positive (ER+) breast cancers were on long-term hormone therapy and the impacts of these drugs were wide-ranging and profound. Because these drugs block the effects of estrogen, women experienced a range of menopausal symptoms including hot flashes, joint and muscle pain, osteoporosis, weight gain, and a feeling of aging. While these effects are also associated with the normal aging process, having to deal with the rapid onset of these symptoms without going through a more gradual transition was often difficult. You can read more about this in endocrine (hormone) therapy.
I was on Arimidex for 6 years and I had nine bad side effects out of the 11. It was horrible. Finally some doctor came down from another province and said "Stop that." But it was to kill all my hormones so I feel like I’ve aged 10 years for every year because no estrogen means arthritis and all sorts of rapid stuff that you get when you get older without your ovaries or whatever.
If I hadn’t had those anti-hormone pills for 6 years I wouldn’t feel so creaky and achy and wrinkly as I would have done had I not had those. I would have sort of aged gradually I think, and maybe have aches and pains gradually because I would have had estrogen.
That drained me dry of estrogen that was the worst part. I could put up with the cancer and that, but it was this premature ageing with no estrogen. Women need estrogen, some of these movie stars they’re 80 and they’ve got estrogen still because they’re getting it. And so, I think that was the worst part. That was rapid, within about a year of being on those pills, I was aching and out of sorts and hurting and stuff. And I realize that I’m ageing as well but there’s a difference.
The "new normal"
Many women expressed a feeling that, although they were no longer in active treatment, they had still not returned to normal as they remembered it prior to their illness. Although most resumed their usual work, home and leisure activities, some felt that they were not functioning as well as they previously had.
I guess one of the things you can say is your normal has changed. It’s a new normal now, this big vein here where all that stuff went up was really bad. It’s still bad but that kind of scared me. I thought it looks like it’s going to break. They said it’s a new normal, my arm swells up. I do get really bad cramps in my back and in the front where this is, where the cancer was, so I guess they’ve... I don’t know what they’ve done to the muscles. They’ve obviously cut some of them. Then my arm, this arm is numb here from it. Chemo left me with numbness in one toe on each foot.
I’m not the same person that I was before I had cancer, so I know it puts a heck of a strain on your body. I don’t think you recover from that. You recover from the cancer but not the stress and strain that was on your body because I’m not the same. I’m older, of course, but I don’t think that did me any good having that. I put weight on because I wasn’t doing what I normally do; dancing and everything else. It certainly slowed me down. I’m still running around doing... I’m in the drama group, I’m in the line dancing, I’m in the gardening club, I’m in all of that but not as much. I used to like to travel and camp and everything, I don’t care for that now. But yeah I wouldn’t recommend it to anybody.
Need for understanding on the part of others
While living with the long-term effects of breast cancer treatment was a challenge in itself, a lack of understanding of these effects on the part of family and friends could be an additional issue. Well-meaning family members and friends would sometimes offer encouragement by telling women that the experience was over and it was time to think positive and move forward. Although well-intentioned, such advice failed to acknowledge the ongoing effects of the illness and treatment. This could leave women feeling misunderstood and alone.
Ginette: But this is something that people are forgetting! This is difficult because when your chemo and your radiotherapy are over, for your relatives – we don’t talk about cancer anymore, it’s over! You are cured! You had your treatments, all is well! You have to be positive in life! All is well! But in real life, at least for me, that’s not how it works.
Getting on with life despite long-term effects of treatment
Although the long-term effects of treatment were often challenging for women to deal with, they were not necessarily debilitating and, despite the challenges, many women were able to get on with their lives and adopt to the 'new normal'.
I need to stand up and move every 30 to 45 minutes to prevent cramping in my torso and so that the lymph fluid doesn’t start pooling in parts of my body. So it’s important for me to exercise and I have bands and balls here at work and they provided me with a sit/stand desk so that I can continue my work. They’ve been very accommodating but it’s been a learning process.
So I think I got in the place that I was blaming the drugs and the chemo and the treatment. I was comfort eating or changing my lifestyle because I didn’t care for a while. Nobody really pointed that out. So it took a surgeon to really smack me in the face with it. Then I started again, that’s when I started getting in shape again, trying to get in shape and eat healthier. I read all the book that help to prevent cancer and just try to go back to what I needed to do to get healthy. And then I realized that I had to change my lifestyle. It wasn’t going to be… treatment is over, cancer is over and you can go back to work and act if nothing ever happened.