Breast cancer is ubiquitous. With nearly 3 million survivors in the United States alone, we all know someone who has, or had, the disease. And we have all seen the pink ribbons, the walk-a-thons, the pink products to support awareness and research. But how often does anyone mention the long-term psychological side effects of the disease and its treatment?
And those side effects are very real. Anxiety, depression, fatigue, cognitive impairment and sexual dysfunction plague breast cancer survivors at rates of significantly higher than women who never had the disease. Maybe it’s the stress of the disease, or side effects of treatment, but 30% to 50% of survivors still experience anxiety a year or more post treatment,10% to 30% (even higher in some studies) experience depression long after treatment ends, and the risk of suicide is 35% to 60% higher than among women who never had breast cancer. On top of that, 20% to 40% of women still experience neuro-cognitive dysfunction a year or more post-treatment. And, as many as 60% of survivors have sexual dysfunction as a result of the disease and its treatment.
Not everyone experiences these side effects, and who does may be a factor of age, other illnesses, prior trauma, genetic makeup and psychological and social support. The specific treatment received also has a huge impact on emotional well-being—women who have a lumpectomy are likely to fare better than those who have a single or double mastectomy, as are women who do not receive chemo or hormonal therapy.
Not only are these psychological effects very real, but cancer still carries a stigma in our society, and cancer of the breast, because it is a body part we don’t discuss in polite society, results in even greater shame and embarrassment. Add to that the stigma of mental illness, and you have a double whammy. Then there is the fact that our identities, sexuality and feelings of self-worth are often associated with our breasts, and we have trifecta of trouble—millions of women going through physical disfigurement and unpleasant treatment unable to talk about the most important, and often most intimate, side effects.
While doctors are focused on curing cancer, treating the whole patient and addressing these side effects is not the norm. Nearly 30% of patients report that their doctors don’t pay attention to anything other than their direct medical care.And when it comes to psychological issues, in the press for time doctors often don’t ask, and patients don’t tell. We are so busy being grateful to be alive, it never occurs to us we have a right to be happy and sexually active and able to function as well as we could before cancer. And then there are the financial considerations. Why should we ask about one more treatment we can’t afford?
But, given the likelihood of emotional side effects, and how long they can hang around, it makes sense to get the support you need, even if your doctor isn’t raising the subject. You deserve to be treated as a whole person and have a right to expect support for your emotional symptoms as part of your medical care. Unfortunately, it’s often up to you to take a little more initiative than you would like to get the support you deserve.
What can you do if you are experiencing emotional side effects from your diagnosis, disease or its treatment?
- Talk to somebody, anybody. Having some type of social support is proven to help.Don’t keep it all inside. A friend, a partner, a family member, even a stranger can help. The simple act of stating your concerns is the first step.
- Initiate the conversation with your doctor—go to your next visit (or schedule a new one) with a list of your questions and concerns and don’t leave until you have gotten an answer that gives you a little hope. Prescription antianxiety or antidepression medication, cognitive behavioral therapy, support groups, even complementary medicine and exercise all can help.
- Find resources beyond your doctor’s office or medical institution. Check out breast-cancer specific sites, such as Share, and Living Beyond Breast Cancer, as well as broad-based services, such as Gilda’s Club/Cancer Support Community, Imerman Angels or Cancer Hope Network that offer free, one-on-one peer support.
Carreira, et al, Associations Between Breast Cancer Survivorship and Adverse Mental Health Outcomes: A Systematic Review, Journal of the National Cancer Institute, (2018) 110 (12): djy177. doi: 10.1093/jnci/djy177
Dominici, et al, “Local Therapy and Quality of Life Outcomes in Young Women with Breast Cancer” SABCS 2018; Abstract GS6-01.
Institute of Medicine. 2008. Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. Washington, DC: The National Academies Press. https://doi.org/10.17226/11993.
Lai C, et al, Sharing Information About Cancer is Associated with Improved Quality of Life, Psycho‐Oncology, 2017. doi: 10.1002/pon.4334