“There are more than two million breast cancer survivors in this country, and that number is growing every day,” Dr. Anne Moore stated at Women At Risk’s 2008 Laurie Bass Sklaver Annual Symposium.  As the early diagnosis and effective treatment of breast cancer advances each year, more and more women are being confronted with the challenge of figuring out what it means to be a “survivor.”  While most women expect breast cancer to end with their treatment, instead, they find that after treatment they enter a new phase of the breast cancer experience often referred to as “Survivorship,” and this phase presents entirely new emotions, challenges and triumphs.

On November 13, 2008, about 200 people gathered at the Symposium to address what Women At Risk called “Survivorship: The Next Frontier in Breast Cancer.” The symposium focused specifically on the physical, emotional and social issues faced by breast cancer survivors and their families and featured presentations by Dr. Anne Moore, MD, Dr. Jon Levenson, MD and Paula Roberts, LMSW, LCSW.  The evening was moderated by Dr. Kathie Ann Joseph, MD, MPH, Women At Risk’s Acting Medical Director.

Dr. Moore began the program by discussing the physical issues survivors may encounter.  She pointed out that “many patients feel lost in transition between being a cancer patient and a cancer survivor,” and it’s important to pay attention to them after their treatment and to create a formal plan for follow-up care.  Immediate issues after treatment may often include fatigue, “chemobrain,” effects of estrogen-deprivation, the possibility and fear of recurrence and issues of fertility and pregnancy.  Dr. Moore reviewed some of the common lifestyle changes that are often cited as helping combat the effects of treatment and prevent recurrence such as diet, alcohol intake, exercise, vitamins and supplements, and stress.  While she showed that research often varies on each of these components, she ended with three basic guidelines for breast cancer survivors following treatment.  Survivors should resume exercise as soon as possible after treatment and ideally maintain some level even during the treatments.  They should watch their diet and attempt to maintain a healthy weight.  Finally, they should limit their alcohol intake to small amounts on special occasions.

In addition to paying attention to the long-term physical care of breast cancer survivors, “addressing psychosocial needs should be an integral part of quality cancer care,” acknowledged Dr. Jon Levenson.  Dr. Levenson noted that while the majority of women do remarkably well during and after treatment, most experience distress at some point, and a quarter to a third of women express or exhibit problems that warrant further assessment.  Because of this, systematic screening for distress is critical and important.  Transitioning to recovery can be accompanied by many emotionally stressful factors such as fear of recurrence, loss of a supportive environment, social demands of re-entry to work and family roles, altered body image and existential and spiritual concerns.  Dr. Levenson identified several factors that are associated with optimal adaptation to survivorship and dealing with these emotions.  These include being an active participant in one’s care, using a social support network and finding a sense of purpose and meaning in one’s life.  Dr. Levenson also mentioned that although many survivors experience emotional distress, most manifest remarkable resilience and some even find benefit from the cancer experience.  Women have reported increased self-esteem, greater interest in and commitment to personal and family health and the ability to “not sweat the small stuff” anymore, allowing them to live more fulfilling lives.

Finally, Paula Roberts addressed the challenges survivors face in their social world after treatment.  They are often transitioning back into family roles and making important decisions regarding child bearing, dating or other family issues. They may also be confronted with workplace and insurance issues.  For instance, breast cancer patients are often afraid to change jobs because of insurance coverage or may be denied deserved promotions because of absenteeism.  “Family, coworkers and friends can all play an important role,” in supporting these women, Ms. Roberts noted, “but cancer survivors may need to talk to other survivors outside of the family environment.”  Support Groups are one way to address this and there are several types available, both in-person and online.  Patient Navigation programs that guide women and their families through the clinical process and ensure quality of care may also “take the sting out of feeling totally overwhelmed and alone,” Ms. Roberts added. 

After the speakers answered questions in response to their presentations, breast cancer survivors Lola Ruz-Curry, Sara Oppenheim, and Carolyn Vardi sat on a panel and answered Dr. Joseph’s questions about their own experiences with survivorship.  Remarkably, all three women reported some positive impact breast cancer had on their lives.  Lola said, “I think my cancer was a blessing, because after my cancer, I changed.  I take care of myself first now, and everything else comes after.  I think life is beautiful and I enjoy every single moment.”  Sara changed her career after surviving breast cancer and became a Patient Navigator for the American Cancer Society.  She remarked, “I was lucky to come through this horrible experience, and I decided that I wanted to give something back to people who were struggling more.  I became less selfish and began thinking about how I could give back.  When Dr. Joseph asked the three women how they felt being called “survivors,” there was a difference of opinion.  While Sara and Lola both said they liked the term, Carolyn commented, “I don’t like the term because to me it means that you’ve gone through something, survived it, and moved on.  But it doesn’t ever really end- the key is finding the place cancer has in your life and managing it and putting it into perspective.”