Breast cancer: the big surprise
I was diagnosed with breast cancer in January 2001. It was a shock, especially since I’d always been healthy, led a healthy lifestyle, and had a family history of longevity — my family members die of old age. I had been lulled into a false sense of complacency, figuring I would always be healthy until I was old. When I heard the words “It’s cancer” at a relatively young age, my world shattered and I would never trust my body again.
I opted for a lumpectomy with radiation over a mastectomy, as I desperately wanted to keep my breasts and because my surgeon told me that a lumpectomy with radiation was as effective a treatment as a mastectomy. The lumpectomy had dirty margins, which made a re-excision necessary. The surgery was followed by chemotherapy and radiation simultaneously. Once radiation treatment ended, chemotherapy continued until August 2001. I was then prescribed an aromatase inhibitor, but after about two years, this medication caused crippling pain in my bones and joints, and my oncologist told me to stop taking it.
In 2006, an MRI revealed a mass in the breast that had been afflicted with cancer. After receiving yet another lumpectomy and biopsy, I was relieved that the mass was just scar tissue. To minimize a recurrence in my highly dense breasts, I opted for a prophylactic bilateral mastectomy with DIEP flap reconstruction. My self-advocacy and excellent doctors helped make this surgery happen.
What I learned
As a patient, I’ve learned how to talk with doctors and how to differentiate physicians who care about me from ones who don’t. I steer away from unprofessional medical personnel, and I gravitate toward those who foster a beneficial patient-doctor relationship of mutual respect.
I’ve learned that I have a voice, how to advocate for myself, and to refuse to be rushed into any treatment plan. The best doctors have encouraged me to think over their treatment recommendations. I realized that the best person to advocate for me is me.
Advocacy work that most interests me
At this point, I am most interested in creating awareness of and de-stigmatizing Post Traumatic Stress Disorder (PTSD) in breast cancer patients and survivors. This is an underexplored area for those diagnosed with breast cancer. After all, if one is lucky enough to survive the disease, people just expect him or her to be “done” with cancer. In my experience, society has not sufficiently acknowledged the psychological impact of breast cancer. Understandably, doctors’ concern is to keep individuals physically healthy and not focus on the patient’s psyche. Good doctors, though, understand they are treating the whole person — the physical and emotional aspects of their patients.
When I bring up my PTSD at my doctor appointments, physicians often don’t know what to say to me. I finally found validation from my primary care physician, who said, “You have a point there. I’ve read that many breast cancer survivors suffer from PTSD.” My supportive oncologist also acknowledges how cancer has affected me. I just wish more medical professionals would acknowledge this important aspect of cancer aftermath.
My advice to newly diagnosed patients
Seek out support that feels right to you. Don’t try to handle diagnosis and treatment alone. Whether it is the American Cancer Society, Gilda’s Club, local breast cancer support groups, and/or the abundant number of online support groups, it’s important to connect with other breast cancer patients and survivors.
My support system
I blog at Calling the Shots to tell my story, not only to help others, but as a type of outlet. I have always been a writer, and I turn to writing as a source of comfort during difficult times. I also read a wide variety of blogs. I find that writing and reading blog posts on breast cancer make me feel less alone and place me in a supportive online community of breast cancer patients, survivors, caregivers, and medical professionals.
I believe that the best online support system for breast cancer patients and survivors is Breast Cancer Social Media (#BCSM). This wonderful, welcoming group comprising countless amazing individuals — including supportive doctors — through tweetchats on Mondays at 9 p.m. US Eastern time. I am grateful #BCSM exists and highly recommend it as an excellent source of information, camaraderie, and support. It’s wonderful to communicate to other patients, as well as medical professionals. In fact, physicians participate in the tweetchat to listen and communicate with patients and survivors, and as someone affected by breast cancer, it is comforting to be heard, as well as educated by them.
Thank you #BCSM and its moderators for helping so many people and being a powerhouse support system. We all appreciate your support.
Beth Gainer is a blogger at Calling the Shots and is finishing a book on navigating the healthcare system. She has shared her writing and cancer experiences on Huffington Post Live. Besides her blog, she can be reached on Twitter at @bethlgainer and her Facebook page.