I was 7 when my mother was diagnosed with breast cancer at age 33. She was a single mother and a fighter. She underwent many rounds of treatment to battle the cancer, including chemotherapy, radiation and surgery. She got better, and we thought she was cancer-free, but after an eight-year period of remission, the cancer came back. Since my older sibling was in the Navy, I — at 15 years old — became her primary caretaker.
These were my formative years in my life and, if not for my mother’s fortitude and help-seeking nature, they would have been isolating and traumatic. We were fortunate to live outside New Haven, Connecticut, where a unique cancer support program was breaking ground. Led by Dr. Bernie Siegel, a humanistic Yale surgeon, Exceptional Cancer Patients brought patients and families together to share their experiences in word and art. My mom and I attended many of these support groups together, and we were comforted and empowered to know that we were not alone and that we could take an active role simultaneous with medical intervention. This experience led my mother to seek out many forms of self-care and complementary medicine, including spiritual retreats and creative writing.
While my mother’s tumor responded well initially to treatment, it ultimately metastasized to her brain and lungs. She surrendered peacefully and comfortably with the support of hospice care at age 43.
[See: 10 Innovations in Cancer Therapy.]
My mother’s loss and example led me to a career in psycho-oncology, where as a psychologist, I conduct research and clinical efforts to enhance the quality of life and care of those facing cancer. I’ve been dedicated to this mission for 20 years as the director of Psychosocial & Integrative Oncology at the Albert Einstein Cancer Center and Montefiore Einstein Center for Cancer Care in Bronx, New York.
Through my experience at these institutions, I’ve spent a lot of time surveying our patients and their families about the types of support they would want in their cancer care. As a result of this I founded the Bronx Oncology Living Daily, or BOLD Living, Program in 2008.
BOLD began with counseling, support groups, community cancer education and an active wellness workshop program centered on mind-body, creative arts and fitness/nutrition offerings.
Soon after, it led to the development of two peer support and navigation initiatives that offer BOLD Buddies (cancer survivor volunteers) and BOLD Brother/Sister peer mentors (teens and young adults who have cared for a parent with cancer) to patients and their families.
As this program lives in one of the most underserved urban communities in the U.S., its mission is tied in with the goals of ensuring that everyone, regardless of socioeconomic background, has access to these quality-of-life enhancing services. As such, BOLD’s sustainability is founded on volunteerism and donations, which allows all services to be offered free of charge, in English and Spanish, and to anyone affected by cancer regardless of where they receive medical care.
From both my personal and professional experience, I share these words of guidance for all those who have been affected by breast cancer or want to be prepared should they ever be. These apply to both men and women unless otherwise noted.
— Risk: One in 8 women and 1 in 833 men are diagnosed with breast cancer each year.
— Risk factors: Age, family history, genetic mutation, radiation exposure, alcohol, liver disease, obesity, estrogen/hormone treatments (women and men), physical inactivity, not having kids or breastfeeding, early menstruation/late menopause, being white, being black for diagnosis under age 45, dense breast tissue, certain benign breast conditions (women).
— Prevention: Early detection is key; get screened as recommended below. Seek medical care if you see or feel a change in your breast or armpit.
— Screening for those without a family history or symptoms: Yearly mammography starting at age 45 (women).
— Screening for those with family history and/or genetic mutations: Discuss genetic testing and screening recommendations for you and your family with your physician.
— Screening for those with signs/symptoms: Consult physician immediately for recommended imaging procedures, such as mammography, ultrasound, MRI.
— Treatment: Depending upon stage, treatment can include surgery, chemotherapy, radiotherapy, hormonal therapy and/or targeted therapies.
— Rehabilitation: Physical therapy and/or exercises.
— Psychosocial care: Breast cancer and its treatment can exert a toll on one’s quality of life; both men and women may experience some pain, fatigue, nausea, difficulties concentrating, numbness/tingling in hands/feet, changes in sexual interest, menopausal symptoms, scars and body image distress. Fears of recurrence, and feelings of depression, anxiety and anger, are not uncommon. For some, tinges of shame or embarrassment may color the experience — a man thinking he has a “woman’s disease,” a woman feeling “less feminine or whole” after losing a breast.
Feelings fluctuate and when they get stuck, there are ways to move past them. There is formal and informal support out there for you. Much of it is accessible.
My hope in sharing this: If you or someone you love is diagnosed with breast cancer, you will be ready, informed and educated, so you can create a BOLD path that works for you.
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Breast Cancer: A Personal and Professional Treatise originally appeared on usnews.com