We Have Heard YOU! The Collateral Damage Project
Guest post by Dr. Susan Love
The Dr. Susan Love Research Foundation launched the Collateral Damage from Breast Cancer Treatment project in October to kick off Breast Cancer Awareness month and we have been very excited by your response to our call for topics and questions to help us document the “cost of the cure” to our lives. The goal of the project is to ask breast cancer survivors about the collateral damage they experienced from their breast cancer treatments and to compare their experiences to those without a history of breast cancer so we can better document the side effects attributable to various treatments. Many of the collateral damage issues you 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. We are eagerly working our way through all your responses to find these previously unreported findings.
Of particular interest was the fact that many of you 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. While most of us would accept the consequences of treatment to save our lives, we really should know what to expect.
If you haven’t had a chance to participate in this project, you can submit your questions or concerns on our Question the Cure website (www.questionthecure.org) until the end of the year. All of the comments and concerns we have received from you will be incorporated into a HOW Study questionnaire to be released this spring. Upon collecting and analyzing this data, we will share it with you as well as presenting it to the medical profession with the goal of improving pretreatment education.
As of now, our collaborators in the Collateral Damage project (Susan G. Komen and Young Survival Coalition) have helped increase participation in the HOW Study with Komen at 382 referrals and Young Survival Coalition at 272. Special kudos to SHARE with 74 referrals, the Triple Negative Breast Cancer Foundation with 70, Living Beyond Breast Cancer with 39, Breastcancer.org with 29, Breast Cancer Action with 13, NBCC with 11, Inflammatory Breast Cancer Foundation with 11, Metastatic Breast Cancer Network with 10, Breast Cancer Fund with 3, and Metavivor with 1.
Stay tuned for our 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.
We also encourage you to refer your friends and family to join the HOW Study (www.healthofwomenstudy.org). Together we will turn research upside down by starting with the patient/public experience rather than just what the researchers think is interesting.
The Dr. Susan Love Research Foundation wants to hear your voice and tap into your experience so together we can achieve a future without breast cancer!
About the author
Nancy G. Brinker promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen and launched the global breast cancer movement. Today, Komen is the world’s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cures. Thanks to events like the Komen Race for the Cure®, we have invested more than $1.9 billion to fulfill our promise, becoming the largest source of nonprofit funds dedicated to the fight against breast cancer in the world.