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.
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.
A rare but especially debilitating long-term effect of treatment was mouth sores.
Chronic fatigue was widely experienced and could, in some cases, dramatically limit women's abilities to carry out normal, everyday activities.
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.
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.
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.
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'.
We describe more of the effects in the topic page lymphedema. Some women also realized that getting back to normal might require a special effort.