The Hidden Pain of Mastectomies: A Call for Awareness and Action
The battle against breast cancer has been a triumph of modern medicine, with survival rates steadily rising. However, a silent and often overlooked consequence of this success is the post-mastectomy pain syndrome (PMPS) that many women endure. This condition, which can last for years, is a stark reminder of the complex and multifaceted nature of cancer treatment. It highlights the need for a comprehensive approach to patient care, one that addresses not only the physical aspects of cancer but also the emotional and psychological toll it takes on patients.
The story of Sophia Bassan, a 43-year-old woman who underwent a preventive mastectomy, illustrates the devastating impact of PMPS. Three weeks after her surgery, she experienced a stabbing pain beneath her right armpit, which radiated through her chest and back. The pain was so severe that it affected her daily life, making it impossible for her to wear a shirt or lift a fork to her mouth. Bassan's experience is not unique; many women who undergo mastectomies are afflicted by PMPS, a condition that spans from uncomfortable to disabling and can last years.
The problem lies in the inconsistent diagnosis and treatment of PMPS. According to a KFF Health News review of peer-reviewed research studies and interviews with pain specialists, surgeons, patients, and patient advocates, women like Bassan are left in agony as they hunt for relief and struggle to find doctors who take their pain seriously. The condition is poorly defined, which contributes to the wide range of estimates for how common it is, reaching as high as more than 50% of mastectomy patients. Even the low-end estimates, around 10%, would amount to tens of thousands of women.
The Advancing Women’s Health Coverage Act, introduced in October, could improve PMPS care by ensuring insurance coverage after breast cancer treatment, including preventive mastectomies. However, the bill does not mention PMPS by name, and it covers complications including chronic pain. More research would help, but pain research has long been fractured across several medical specialties and has been undermined by the administration of President Donald Trump, who last year 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.
The lack of a consistent definition for diagnosis, no standardized screening, and no treatment approved by the Food and Drug Administration, contribute to the undertreatment of PMPS. Even the name is a misnomer, as the same pain can arise among women who’ve had other procedures, including lumpectomies and lymph node surgeries. The condition was historically dismissed, with women being told to 'suck it up and deal with it'.
The pain is believed to be triggered by nerves that are severed during surgery and then left that way. The nerves can be sutured back together to minimize pain, but most breast surgeons haven’t been trained to do this. This lack of training contributes to the dismissive attitude of some doctors towards PMPS, who say there is no problem when they don’t have an answer or don’t know the solution.
The aftermath of Bassan’s surgery was far worse than she expected. Using a computer for hours triggered paralyzing pain, so she lost her job and has been out of work for more than a year. Prescription pills dulled the pain but left her in a fog, and a nerve stimulation machine provided fleeting relief. About nine months after her mastectomy, a breast reconstruction surgery lessened her pain, although it still returns in occasional waves. Even though her surgeries were covered by insurance, Bassan estimated her pain has cost her more than $200,000 in lost wages and drained savings.
Jeni Golomb, 48, who was diagnosed with stage 2 cancer in both breasts in 2023 and had a double mastectomy, also struggled with PMPS. She managed her chronic pain by taking 1,500 milligrams a day of gabapentin, an anti-seizure drug that can also be used to treat nerve pain. Golomb said she expects to take the drug for years, and if she misses a dose, her pain comes roaring back.
The Baylor study, published in 2024, said there is “no current gold standard” for how to treat post-mastectomy pain and a scarcity of high-level evidence for what treatments are effective. Many patients eventually find a helpful treatment, but it often takes “a bit of trial and error” to identify what works for each. And sometimes they never find it.
Susan Dishell, 67, who had a 2017 mastectomy for breast cancer and reconstruction surgery, struggled for five years with pain in both shoulders, plus a burning sensation that her medical records identified as nerve pain. Another surgery swapped out her breast implants to erase her shoulder pain in 2022, but doctors warned her then that her other pain was unlikely to improve. Since then, she has tried prescription drugs, steroid injections, CBD oil, acupuncture, physical therapy, and chiropractor treatments, with no success.
The battle against breast cancer has been a triumph of modern medicine, but the hidden pain of PMPS is a stark reminder of the complex and multifaceted nature of cancer treatment. It highlights the need for a comprehensive approach to patient care, one that addresses not only the physical aspects of cancer but also the emotional and psychological toll it takes on patients. It is time for a deeper understanding and a more compassionate approach to PMPS, one that ensures women like Bassan, Golomb, and Dishell can live well after their cancer battles.
