Survivorship, the “Cost of the Cure” to Our Lives

Did you know that there are more than 2.9 million breast cancer survivors in the U.S.?  As we continue to work so that the number of people who have had breast cancer drops, the sheer number of survivors shows the great strides that have been made in early detection and treatment. Today, most breast cancer survivors lead long and fulfilling lives.

When breast cancer treatment begins, many people think that their last day of treatment will signal the end of this challenge in their lives. But some report ongoing physical and emotional issues that they did not expect. Lasting side effects of treatment and emotional concerns are common.  Susan G. Komen has partnered with The Dr. Susan Love Research Foundation in the Collateral Damage from Breast Cancer Treatment project, gathering topics and questions to help document the “cost of the cure” to our lives.

By asking breast cancer survivors about the collateral damage they experienced from their breast cancer treatments then comparing their experiences to those without a history of breast cancer, we can better document the side effects attributable to various treatments. Many of the collateral damage issues that are being reported were not unexpected, such as lymphedema, depression/anxiety, fatigue, memory problems/chemobrain, and sexual problems. Other side effects that are less recognized include issues with toenails and fingernails as well as dripping noses in those taking Herceptin.

While most of us would accept the consequences of treatment to save our lives, of particular interest was the fact that many were not told, or at least did not remember being told, about many of the side effects that are already well recognized. For example, you will always be numb after a mastectomy and will never get the feeling back. This has to do with the way the operation is done– cutting all the sensory nerves. Other long term consequences such as neuropathy, pins and needles, and sensory problems from the chemotherapy also don’t get better. Some of the sexual issues, such as loss of libido or dryness, can be caused by drugs like aromatase inhibitors (AI’s) which could resolve once you stop taking them, but if they are caused by menopause, they probably won’t resolve.

Be watching for the Collateral Damage questionnaire in the spring. This will go out to all HOW participants, both those with and without a previous diagnosis of breast cancer, because only by comparing the women who have undergone treatment to those that have not, will we be able to figure out what is normal aging or menopause-related, versus a result of the treatment.