Post-Mastectomy Pain Syndrome Afflicts Thousands, Often Undiagnosed and Dismissed
Post-mastectomy pain syndrome affects 10-50% of women after breast removal surgery, causing chronic pain that can last years. The condition lacks consistent diagnosis, standardized screening, and FDA-approved treatments, leaving many patients struggling to find relief. Recent research calls for increased focus on this undertreated complication of breast cancer survival success.
Many women who undergo mastectomies for breast cancer treatment or prevention suffer from a debilitating chronic pain condition that is inconsistently diagnosed and treated, leaving them in agony and struggling to find doctors who take their pain seriously. Post-mastectomy pain syndrome, or PMPS, spans from uncomfortable to disabling and can last years, affecting an estimated 10% to more than 50% of mastectomy patients according to studies, which would amount to tens of thousands of women even at the low-end estimates.
The condition has no consistent definition for diagnosis, no standardized screening, and no treatment approved by the Food and Drug Administration. Even the name is a misnomer, since the same pain can arise among women who've had other procedures, including lumpectomies. PMPS care could improve if lawmakers pass the Advancing Women's Health Coverage Act, which was introduced in October to ensure insurance coverage after breast cancer treatment, including preventive mastectomies. The bill, which does not mention PMPS by name, covers complications including chronic pain.
Four mastectomy patients interviewed told similar stories of their presurgery consultations not raising the possibility of post-mastectomy pain syndrome, although each said they had signed forms that may have disclosed the chance of this complication. All said that they felt blindsided by the chronic pain, and some said their doctors dismissed their symptoms. Breast cancer survival rates have steadily increased since the 1980s thanks to improved cancer screening, genetic testing, better treatments, and a rise in mastectomy surgeries. Post-mastectomy pain syndrome is a consequence of that success, according to recent research papers from anesthesiologists at Baylor University in Texas and surgeons in Chicago and New York.
"In the past, when concern was predominantly on patient survival, this pain was often considered acceptable," plastic surgeons wrote in a 2021 paper, adding that mastectomies and other breast surgeries "should be considered truly successful only if patients are pain-free." More research would help, but pain research has long been fractured across several medical specialties and, more recently, has been undermined by proposed deep cuts to research funding at the National Institutes of Health. After Congress rejected those cuts earlier this year, the White House slowed the release of NIH grant money, hindering ongoing and future scientific research.
Mastectomies are lifesaving surgeries that remove a patient's breasts to treat breast cancer, which affects 1 in 8 American women over their lifetimes, according to the American Cancer Society. Some women also undergo mastectomies as a preventive measure after a genetic test shows they have an increased risk for breast cancer.