By Dr. Alice Police M.D. The Northwell Health Director of Breast Surgery for the Westchester Region NY
I will always remember the first time a patient said to me “Thank you for curing my breast cancer but you ruined my life.” She said it in a way that let me know that she was genuinely grateful for the wonders of medical science that had allowed her to be speedily and efficiently cared for in a way that left her with a 95% chance of living a normal life span without ever hearing from breast cancer again. However, I felt like I had been slapped smartly across my face by a reality that included issues and concerns that had never occurred to me even as an experienced surgical oncologist. I was floored by the fact that this intelligent and seemingly well-adjusted woman was not just singing my praises because she was alive and disease free. Why was she not deliriously happy and looking forward to every cancer free day? What could be more important?
I decided to ask her to explain her statement. I realized that this was a learning opportunity for me, and that there apparently were things that I did not yet comprehend about the evolving and increasingly complex world of cancer treatment. At that time “survivorship” was not a word common to my lexicon and I subconsciously believed that my responsibility ended with NED (no evidence of disease) and a cursory imaging follow-up plan. I took no responsibility for the devastation of a person’s personal, family, and sexual life, nor their self-image, physical impairment or emotional and psychological well-being that is impacted by cancer treatment.
I believed these things were the responsibility of a primary care physician. My priority was to see the next new breast cancer patient and to repeat the satisfying process of “curing the cancer”. The fact that this woman considered the aftermath of her disease and treatment to be part of my job description came as a surprise to me.
It was also shocking to me that she was seriously entertaining the idea that her new life was something that she was not interested in continuing without some serious help. She was asking for help and I wasn't really prepared to give it to her. She and her husband were both unhappy, their previously vital and active sex life was affected by her therapy and there was no apparent solution in sight. She had no sexual desire, felt completely undesirable and told me “It’s like a desert down there.” Sex was difficult and painful, and they had stopped trying.
She was racked with guilt over the fact that there was now a “family history” of breast cancer and that her children were at higher risk for developing cancer. She felt that her friends were becoming distant and worried that she was losing them as she was no longer “a sparkling personality and great hostess”. She had missed a significant amount of work and feared losing her job and despite her very low chance of a cancer recurrence she was suffering from crippling anxiety, thinking that every ache, pain or funny feeling could be her cancer coming back.
In addition to the physical and emotional toll of her cancer treatment she like many individuals was confused about the role of exercise and nutrition. She knew that exercise was beneficial but did not know what kind was best and thought that a gym membership was too expensive for the family. When I told her to just go outside and walk she almost cried. The “financial toxicity” of cancer treatment added stress to all of her relationships and was one more thing contributing to her insomnia and overall feeling of living in a post-apocalyptic world. At the time I had very little to offer her.
What an awakening! I had always considered myself to be an empathetic doctor and she helped me realize that I was definitely behind the curve and had some serious remedial learning to do. How many patients had suffered because I had not understood the significance of their post-treatment needs? How many had I failed to help? For years I had been focused on creating a comprehensive screening, diagnostic, and treatment model for breast cancer for my community and now I understood that this was actually just the beginning. The whole idea of comprehensive care needed to be taken one step further. There were a few scattered post treatment programs and services available and some of my patients were able to access them, but a well-designed post treatment recovery program simply didn't exist.
In the last several years the importance of a comprehensive, science based, survivorship program has become clearer and they are beginning to appear around the country. They are not widely available or easily accessible for most patients, especially those who do not have the disposable income or time. Importantly, attention to “survivorship” is increasingly recognized as a critical component of the overall treatment for breast cancer and is now required by some national societies. There is however a lack of economic infrastructure to support the development and maintenance of these programs despite increasingly clear scientific evidence that diet and exercise are important components of a program to help prevent recurrence of breast cancer. To further compound the problem, more women are in need of post treatment services because scientific advances have made early stage breast cancer a mostly curable disease and metastatic breast cancer is evolving into a treatable chronic illness.
The development of post treatment comprehensive survivorship programs that address the sequelae of a cancer diagnosis and its treatment is the next great challenge facing the cancer care community. Post treatment breast cancer survivorship programs need to facilitate re-entry into life, work, family and relationships and may offer a breast cancer patient the following services:
· Education and implementation of an exercise program designed for general strengthening and stamina.
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· Nutritional counseling. Many patients see a breast cancer diagnosis as a trigger event that propels them to make needed dietary changes.
· Psychological counseling. The impact of a cancer diagnosis on a patient’s sense of well-being and control cannot be over-estimated. Some patients have a network of friends and family that may or may not be helpful in this regard and others have very few resources.
· Family counseling. When Mom has breast cancer the whole family has breast cancer. Children and significant others often need and can benefit from counseling.
· Support groups led by qualified volunteers.
· Adequate pain control including physicians trained in pain management.
· A clear follow-up plan with radiology, medical oncology, radiation oncology and surgery. This plan should be coordinated by a healthcare professional. Many patients, particularly the elderly, fall through the cracks and miss important appointments.
· Sexual medicine specialists exist but are rare and can help rejuvenate a patient’s sex life. The knowledge and techniques are there but available to too few patients.
· Patients in their child –bearing years should have access to Onco-fertility specialists that allow breast cancer patients to have or expand their families.
· Physical Therapy to restore range of motion and to prevent known complications such as “frozen shoulder” which is a painful and almost completely avoidable condition.
Recently I spoke with a woman who said to me: “Thank God I got breast cancer! My daughter is speaking to me again after I received psychological counselling that helped me sort out our relationship. My husband and I have reconnected since he felt that he might lose me and realized how much I mean to him. I have started eating healthier foods and exercising and my blood pressure has improved. My new lease on life has encouraged me to finish my degree and get a new job. I am a better and happier person since before my diagnosis and treatment.”
The development of post treatment survivorship programs is essential to insure full recovery and help individuals live more fulfilling lives following a diagnosis of cancer. It is the next step in the evolution of “comprehensive” cancer care.