What is post-mastectomy pain syndrome? The ‘excruciating’ complication most patients don’t know about

Losing your breasts comes with a lot of baggage.

After Angelina Jolie announced her preventative double mastectomy in 2013, women increasingly sought breast cancer screenings, gene testing and mastectomies of their own in what’s been hailed as a major win for breast cancer prevention.

But a disturbing trend has since emerged among women who have undergone surgery to remove their breasts, prompting researchers to question whether mastectomies offer patients the best quality of life once they leave the operating room.

Post-mastectomy pain syndrome (PMPS) — or neuropathic pain syndrome, and in some cases, post-top surgery pain syndrome — can haunt patients for months and sometimes years after their scars heal. 

For some sufferers, the sensation is not just “pain” — it’s more excruciating than childbirth.

Given that the American Cancer Society estimates 1 in 8 US women will receive a breast cancer diagnosis in their lifetime, mastectomy surgery is the practical and life-saving choice for many women. 

And the data bears that out: Rates of breast cancer survival have steadily climbed since the 1980s as the surgery, which effectively treats and prevents cancer by fully removing one or both breasts, has grown more popular.

But many mastectomy patients aren’t aware of potential complications like PMPS — and only become aware once they’re already experiencing them.

Speaking to KFF Health News, author Kathy Steligo, who’s written extensively on breast cancer and interviewed hundreds of patients, said she’s become quite familiar with the condition. 

“I’ve known women who’ve had chronic pain — itching, burning, stabbing pain — for years after mastectomies,” she said. “Of all the problems, that is probably the one least talked about by surgeons.”

Some researchers are trying to change that.

Several recent papers have advocated for more serious study of PMPS, which still doesn’t have an “official definition,” according to KFF — though it often looks like pain in the chest, shoulder, arm or armpit that tends to stick around for at least three months after the procedure. 

There are several unknowns that surround PMPS, but New York plastic surgeon Jonathan Bank has said the condition is likely the cause of nerves that have been severed during surgery and not sutured back up, which would minimize the pain. 

Few surgeons performing mastectomies have been trained to do that last part.

Experts like Stanford University anesthesiologist Sean Mackey have said the toll of PMPS is often underplayed by doctors.

“The condition was historically dismissed,” Mackey told KFF. “Basically women were told: ‘You’re lucky to be alive. Some pain is expected. Suck it up and deal with it.’ That attitude has been slow to change.”

In 2021, Bank coauthored a paper with a fellow surgeon about PMPS. “In the past, when concern was predominantly on patient survival, this pain was often considered acceptable,” they wrote. 

Moving forward, however, mastectomies “should be considered truly successful only if patients are pain-free.”

Double mastectomy patient and breast cancer survivor Jeni Golomb, 48, who takes 1,500 milligrams of gabapentin each day to manage her chronic PMPS, called the condition the “worst pain” she’d ever felt. 

“I labored to 10 centimeters, unmedicated, with one of my children, and that was not as bad as this. It was excruciating,” she told KFF.

Sophia Bassan, 43, is now three years older than her grandmother was at the time of her death from breast cancer. Bassan recently sought a double mastectomy after genetic testing showed she was at risk of developing the disease herself.

During her months of recovery, she experienced pain so agonizing she couldn’t lie down.

“One time I was in so much pain that I had to take off my top, and then my cat’s tail brushed against my back,” she told KFF. “I screamed.” 

“Women don’t know about this, and when they have complications, the doctors act like it is so rare, like they’re so baffled,” Bassan added. “But this is statistically predictable.”

With mastectomy rates on the rise — part of what scientists now are calling the “Angelina Jolie effect” — it seems PMPS education will only become more relevant and necessary. 

But for Bassan, one of the scores of women influenced by Jolie, that education has come too late. 

“I was really swayed by that,” Bassan said of Jolie’s essay. “She made it sound, in a way, quite effortless.”

The Post reached out to Jolie’s reps for comment.

Now, after losing her job due to “paralyzing pain” that prevents her from even using a computer for a few hours at a time, Bassan has wondered if she made the right decision. 

“I did not expect to pay this price to have this surgery,” she said. “I don’t know if it was worth it.”