After the battle has been won: Breast cancer’s collateral damage
October 28, 2015
Craig — When pink takes over the nation each October for National Breast Cancer Awareness Month, Craig breast cancer survivor Beckey Grabowski tries to hunker down and wait for it to pass.
"The first time I ever said getting breast cancer sucks, a lot of people sort of attacked me and said the pink ribbon is a sign of courage," she said. "All they ever talk about is early detection and when you're cured and life is so wonderful, and that's not the case for a lot of women."
Survivors of breast cancer must all deal with the aftermath of the disease — the physical and emotional trauma and lingering side effects — but the impact is more severe and longer lasting for some. Though the battle to save their lives may have been won, the "collateral damage," as Beckey puts it, deserves more attention during "Pinktober."
"A lot of people have a lot of pain after cancer and things are not the same, hormones are not the same," said Danika Friedley, physical therapist at The Memorial Hospital Rehabilitation Center. "It's a lifetime adjustment to everything. It's not just in and out and you're cured."
Beckey was diagnosed with stage 3 breast cancer at age 41. Now, nearly six years after a double mastectomy and lymphadenectomy, Beckey fights near daily battles with nerve pain from what's known as Post-Mastectomy Pain Syndrome.
"I thought it would just be a really bad nine-month flu," Beckey said of her original diagnosis. "If someone gave me a crystal ball back at diagnosis, January 2010, and showed me what my life would be like after those aggressive treatments, I would never have accepted treatment."
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PMPS is a condition that doctors believe stems from nerve damage during surgery, which some women report causes burning, stinging or stabbing pains in the chest or armpit area or even an itching sensation. One study published in the British Journal of Cancer found that nearly one in four women who underwent breast cancer surgery suffered from PMPS, while other estimates range as high as 50 percent.
Beckey likens her pain to wasp stings and stabbing sensations, among other things, and has sought out every treatment she can find to counteract the at times debilitating pain. Last month, she received her third rhizotomy in less than two years — a painful procedure that burns and severs nerves near Beckey's spine to deaden the pain.
"With women's mastectomies, there (can be) a lot of nerve damage," said Dr. Brian Siegel, MD, Beckey's pain management doctor at Yampa Valley Medical Center. He added that cancer survivors often are quiet about treatment side effects, and he hopes they learn of options when it comes to dealing with pain.
The problem with rhizotomies, also known as radiofrequency ablations, is that nerves can regenerate and pain relief typically lasts only about nine to 14 months. In Beckey's case, it lasted about five months after her second time doing the procedure.
"I use a lot of meditation and brain work and stuff like that to try to make it work longer," she said. "I'm hopeful that I'll go back to a six instead of an 18 out of 10 on the pain scale. I can live my life at a six. It's the 18 that I can't do."
Many cancer survivors, including Beckey, also must learn to live with memory problems, neuropathy causing numbness in the hands and feet, brittle bones and tissue damage as a result of surgeries, chemotherapy and radiation.
Another common and often misdiagnosed side effect is lymphedema, a condition that causes fluid build-up in the body due to the removal of lymph nodes during cancer surgeries.
"It's progressive, there's no cure for it, it's chronic and that's hard to accept," Friedley said. "These patients have to wear compression garments for the rest of their lives."
Friedley is now able to treat lymphedema patients in Craig after attending an intensive and renowned training in March, where she learned specialized massage and bandaging techniques to redirect lymph flow and flush fluids out of the tissues. Beckey receives treatments from Friedley up to three times per week when her symptoms are bad.
For emotional support, Beckey turns to a private Facebook group dedicated to women who experience PMPS. The women share tips for managing their pain and also lend each other support and understanding.
Beckey’s husband and 12-year-old son are central to her life, and though she tried to go back to work as a school counselor after her initial recovery, her chemo-related cognitive difficulties and pain forced her into an early retirement.
She is now compiling a book for other cancer survivors on treatment options available to those suffering from PMPS, including some she has tried herself and others she's collected from other women from around the world.
"It seems everyone I've run into with post-mastectomy pain syndrome, they've said they thought they were the only one," Beckey said. "Most of us are just trying to figure out how to manage this ‘new’ life… Until they find a cure, we have to learn how to take care of ourselves and advocate for ourselves."