Three weeks after her mastectomy, Sophia Bassan began experiencing a sharp pain under her right armpit. In the months that followed, she felt painful jolts shooting through her chest and back. It got to a point where her body was so sensitive that sometimes she couldn’t even wear a shirt or lift a fork to eat.
She ended up sleeping upright because lying down was too uncomfortable and flinched at the slightest touch.
“I truly thought I was losing my mind,” the 43-year-old Bassan recalled. “There was one moment when I was in such agony that I had to take my top off, and when my cat’s tail brushed against my back, I screamed.”
Mastectomies can be lifesaving, removing breasts to combat breast cancer, which affects about one in eight women in the U.S., as noted by the American Cancer Society. Some women opt for a mastectomy as a preventative measure after genetic tests indicate a higher risk for the disease.
However, many women experience what’s known as post-mastectomy pain syndrome (PMPS) in the months after their surgery. This syndrome can cause varying levels of discomfort, sometimes even debilitating, and in certain cases, it can last for years.
Unfortunately, PMPS is often diagnosed and treated inconsistently, leaving many women like Bassan in persistent pain as they search for relief and struggle to have their pain taken seriously by medical professionals, as highlighted by a review from KFF Health News.
Moreover, the condition itself isn’t clearly defined, leading to a broad range of estimates about its prevalence—some studies suggest it affects more than 50% of mastectomy patients, while even the lower estimates suggest tens of thousands of women experience it.
Legislation like the Advancing Women’s Health Coverage Act, introduced in October, could help improve how PMPS is managed. This bill aims to ensure insurance coverage for complications from breast cancer treatment, including chronic pain, although it doesn’t explicitly mention PMPS. Research in this area is needed, but funding for pain research has faced setbacks, especially in light of proposed cuts to the National Institutes of Health during the Trump administration.
“I’ve met many women who deal with chronic pain—itching, burning, sharp pains—long after their mastectomies,” said Kathy Steligo, who has authored several books on breast cancer and communicated with hundreds of patients. “Unfortunately, this is one of the issues least discussed by surgeons.”
In interviews, several mastectomy patients shared similar experiences. They noted that pre-surgery consultations rarely mentioned PMPS, though they had signed forms acknowledging the potential for complications. Many felt blindsided by the chronic pain and felt dismissed by their doctors.
“Women aren’t aware of this, and when complications arise, it seems their doctors act surprised, as if it’s a rare occurrence,” Bassan remarked. “But statistically, it’s quite predictable.”
Jennifer Drubin Clark, 42, experienced pain after her mastectomy in 2018, which worsened following reconstructive surgery the next year.
Yet she felt her surgeon was more focused on the aesthetic of the breast implants.
“I couldn’t play the piano. I wanted to dry my hair, but raising my arm above my head was impossible for more than a few seconds. I couldn’t even hold my kids,” Clark expressed. “Everything made me tear up.”
Despite the increasing survival rates for breast cancer since the 1980s—thanks to better screenings and treatments—post-mastectomy pain syndrome has emerged as an overlooked consequence of these successes, according to recent studies from medical experts.
Both studies advocate for addressing PMPS, suggesting that while patients may live longer, their quality of life needs to be improved, too.
As noted in a 2021 paper, the focus on merely surviving can lead to the painful experiences that some patients endure being treated as acceptable. Mastectomies should be regarded as successful only if they leave patients without pain, the authors asserted.
Yet the journey toward effective treatment for PMPS is far from easy. Stanford’s Sean Mackey, a pain management specialist, highlighted that this often undermined condition lacks a universal definition and, therefore, uniform screening methods or FDA-approved treatments.
In fact, Mackey pointed out that the term itself can be misleading since similar pain can occur in women who have had other procedures, like lumpectomies.
“Historically, this condition was dismissed,” he added. “Women were essentially told: ‘You’re lucky to be alive. Some level of pain is expected. Just cope with it.’”
This dismissive attitude is changing slowly, but the road ahead remains long.
As a surgeon who opened a clinic dedicated to post-mastectomy pain, Bank acknowledged that the pain often arises from nerves that are cut during surgery and subsequently not tend to be repaired.
While these nerves could be stitched back together to reduce pain, many breast surgeons lack the training necessary to perform this procedure. It’s not surprising, then, that some patients report feeling unheard when discussing their post-surgery pain.
“When doctors lack answers or solutions, it’s easy for them to downplay the issue,” Bank added.
Though PMPS has been recorded in cancer patients since the 1970s, its absence of a defined criterion can make it challenging; researchers often describe it as a persistent pain in the chest, shoulder, arm, or armpit lasting at least three months following surgery.
Preventive mastectomies are becoming more common among women with heightened risk factors, including genetic predispositions and familial histories of breast cancer.
Bassan’s grandmother passed away from breast cancer at 40. After losing her father to cancer in 2023, a genetic test indicated she was at increased risk. In a state of grief and anxiety, she decided to undergo a preventive mastectomy without hesitation.
Influenced by Angelina Jolie’s public narrative surrounding her own preventive mastectomy, Bassan felt motivated by the ease with which Jolie described her decision.
“I was really impacted by that,” Bassan said. “She made it seem quite effortless.”
But the aftermath of Bassan’s surgery proved to be much harsher than she anticipated. Simple tasks like working on a computer led to intense pain, causing her to lose her job and remain out of work for more than a year. While prescription pills helped alleviate some pain, they also left her in a mental haze. In desperation, she turned to various doctors until one recommended a nerve stimulation machine, which offered temporary relief.
About nine months post-mastectomy, breast reconstruction surgery alleviated some of Bassan’s pain, though it does return occasionally. Even though her surgeries were covered by insurance, she estimates her pain has cost her over $200,000 in lost income and drained savings.
“I never expected to pay this much after the surgery,” Bassan reflected. “I’m not sure if it was worth it.”
For other women, the situation feels as if they have no real choice.
Jeni Golomb, 48, was diagnosed with stage 2 cancer in both breasts in 2023 and quickly opted for a double mastectomy.
While doctors provided general warnings about possible complications, Golomb claimed she didn’t learn about post-mastectomy pain syndrome until after experiencing it.
Now, to manage her chronic pain, she takes 1,500 milligrams of gabapentin every day, a drug usually for seizures that can also tackle nerve pain. She expects to rely on this medication for years, and skipping a dose causes her pain to intensify significantly.
“It was the worst pain I’ve ever encountered,” Golomb remarked. “To compare, I labored with one of my children, and that was less painful than this. It was unbearable.”
While gabapentin has shown to help some women with stubborn post-mastectomy pain, others have benefited from spinal column electrodes, according to a recent Baylor study.
However, this study also pointed out that there’s no established standard for treating post-mastectomy pain, and high-quality evidence for effective treatments remains sparse.
Krishna Shah, a co-author of the report, noted that many patients eventually do find something that helps, but it often requires “a bit of trial and error” to figure out what specifically works.
But sometimes those solutions elude them entirely.
Susan Dishell, 67, mentioned that after her mastectomy and reconstructive surgery in 2017, she contended with pain in both shoulders and a burning sensation—identified as nerve pain in her medical records—for five years.
After another procedure in 2022 that replaced her breast implants, doctors cautioned her that her shoulder pain might not improve.
Since then, she’s explored various options: prescription medications, steroid injections, CBD oil, acupuncture, physical therapy, and chiropractic adjustments.
Nothing seemed to work, leading her to give up.
“I haven’t had a full night’s sleep since my diagnosis,” Dishell stated. “But hey, it’s OK. It’s not the worst thing to endure to avoid breast cancer.”
