Brett Kelman and Amy Maxmen
| KFF Health News
These women prove that female friendships matter
She wanted her best friend to accompany her to the mammogram, not her husband. They stayed by each other’s side through breakups, mastectomies, and chemotherapy.
Three weeks after Sophia Bassin’s mastectomy, she felt a stabbing pain in her right armpit. Over the next few months, painful jolts spread through her chest and back. Her body became so sensitive that she was sometimes unable to put on a shirt or lift a fork to her mouth.
Bassan was in pain when he lay down and would flinch at the slightest touch, so he had to sleep sitting up.
Bassin, 43, said: “I remember thinking I was losing my mind. At one point, I was in so much pain that I had to take off my jacket, and then the cat’s tail hit my back and I screamed.”
According to the American Cancer Society, a mastectomy is a life-saving surgery in which a patient’s breast is removed to treat breast cancer, which affects one in eight American women during their lifetime. Some women undergo mastectomies as a preventive measure after genetic testing shows they have an increased risk of breast cancer.
For several months after surgery, many women experience post-mastectomy pain syndrome (PMPS). The symptoms can range from unpleasant to disabling, and in some cases can last for years.
But diagnosis and treatment of PMPS is inconsistent, leaving women like Bassan struggling to find relief and struggling to find doctors who take their pain seriously, according to a KFF Health News review of peer-reviewed research studies and interviews with pain experts, surgeons, patients and patient advocates.
Another problem is that the definition of PMPS is not well established, which results in a wide range of estimates of how common it is, including in more than 50% of mastectomy patients, according to studies. The lowest estimate, about 10%, would include tens of thousands of women.
PMPS care could improve if lawmakers pass the Women’s Health Coverage Promotion Act, introduced in October to ensure insurance coverage after breast cancer treatment, including prophylactic mastectomies. Although the bill does not mention PMPS by name, it targets complications including chronic pain. More research would help, but pain research has long been divided among several medical specialties and more recently undermined by President Donald Trump’s administration, which last year proposed deep cuts to research funding at the National Institutes of Health. After Congress rejected these cuts earlier this year, the White House delayed disbursing NIH grants, hampering current and future scientific research.
“I know women who have had chronic pain, itching, burning, stinging, for years after a mastectomy,” said Kathy Stelligo, author of multiple books on breast cancer and who has spoken to hundreds of patients. “Of all the issues, it’s probably the least talked about among surgeons.”
Four mastectomy patients interviewed by KFF Health News told similar stories. In separate interviews, the patients said that post-mastectomy pain syndrome was not likely during their pre-surgical examination, but that each patient signed a form that may have revealed the possibility of this complication. All said they were blinded by their chronic pain, and some said their doctors ignored their symptoms.
“Women don’t know this, and when they have complications, doctors act very embarrassed, as if it’s very rare,” Bassin said. “But this is statistically predictable.”
Jennifer Dolbin Clark, 42, suffered from pain after a mastectomy in 2018, and the pain worsened after breast reconstruction surgery in 2019.
But her surgeon seemed only focused on the appearance of her breast implants, she said.
“I couldn’t play the piano. I wanted to blow dry my hair, but I couldn’t hold my arms above my head for more than two seconds. I couldn’t hold my children,” Clark said. “Everything made me cry.”
Millennial women are diagnosed with cancer. This website is helping them.
pain often resolves
Breast cancer survival rates have steadily increased since the 1980s, thanks to improvements in cancer screening, genetic testing, treatments, and an increase in mastectomies.
Post-mastectomy pain syndrome is a result of that success, according to a recent research paper by anesthesiologists at Baylor University in Texas and surgeons in Chicago and New York. Both papers call for more attention to PMPS so that breast cancer patients can not only live longer, but also stay healthier.
“In the past, this pain was often considered tolerable when the primary concern was patient survival,” plastic surgeons Jonathan Bank and Maureen Biedermann wrote in a 2021 paper, adding that mastectomies and other breast surgeries “should only be considered truly successful if the patient is pain-free.”
Sean McKee, an anesthesiologist who heads the division of pain medicine at Stanford University, said there is a long way to go in treating pain after mastectomy. McKee said there is no consistent diagnostic definition for this “undertreated” condition, nor are there standardized screenings or treatments approved by the Food and Drug Administration.
Even the name is a misnomer, McKee said, because the same pain can occur in women who have undergone other surgeries, such as lumpectomy or lymph node surgery.
“This condition has historically been rejected,” McKee said. “Basically women were told: ‘You’re lucky to be alive. Some pain is to be expected. Be patient and deal with it.'”
“That attitude is slow to change,” he says.
Bank, a New York surgeon who founded a clinic focused on post-mastectomy pain, said the pain is thought to be caused by nerves that were severed during surgery and left in place.
It’s possible to suture the nerve back to minimize pain, but most breast surgeons don’t have that training, Bank said. So it’s not surprising that some patients say their surgeons ignored their post-mastectomy pain, he says.
“If the doctor doesn’t have the answer or doesn’t know the solution, the easiest way is to say there’s no problem,” Bank said.
PMPS has been reported among cancer patients since the 1970s. Although there is no formal definition for this condition, many researchers describe it as frequent pain in the chest, shoulders, arms, or armpits that persists for at least three months after surgery.
Mastectomies to prevent breast cancer are becoming more common among women at higher risk, such as because of genetic mutations or a family history of breast cancer.
Bassin’s grandmother died of breast cancer when she was 40 years old. After her father died of cancer in 2023, genetic testing revealed she was at risk. Sad and frightened, Bassan didn’t hesitate to seek a preventive mastectomy, she said. Bassin said she was also inspired by actor Angelina Jolie, who revealed her prophylactic mastectomy in a 2013 New York Times column. Her testimony had such an impact on rates of genetic testing and prophylactic mastectomies that medical researchers studied a phenomenon they called the “Angelina Jolie effect.”
“I was really upset about it,” Bassan said. “She did it very effortlessly, in a way.”
Bassin’s post-surgery effects were much worse than she expected. She lost her job and has been out of work for over a year because hours of computer use caused paralyzing pain. Prescription medication eased the pain, but she said she was in a fog. Feeling hopeless, she consulted several doctors, but one doctor suggested a nerve stimulator, which temporarily relieved her symptoms.
About nine months after her mastectomy, Bassan’s pain was alleviated by breast reconstruction surgery, but she said the pain still comes back from time to time. Even though her surgery was covered by insurance, Bassan estimated that the pain cost her more than $200,000 in lost wages and savings.
“I never expected to pay this much to have this surgery,” Bassan said. “I don’t know if it was worth it.”
Other women don’t really have a choice.
At the age of 25, she discovered that she had this gene. Now she is grieving motherhood.
There is no “gold standard” solution
Jenni Golomb, 48, was diagnosed with stage 2 cancer in both breasts in 2023 and underwent a double mastectomy as soon as possible.
Golomb said her doctors disclosed standard information about possible complications, but she had never heard of “post-mastectomy pain syndrome” before developing the disease.
Golomb currently manages his 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 he expects to be on the drug for many years. If you forget to take it, the pain will come back.
“It was the worst pain I’ve ever felt,” Golomb said. “I went into labor with one of my children to 10 centimeters without any medication, but it wasn’t as bad as this. It was excruciating.”
A Baylor study published in 2024 found that gabapentin proved effective in helping some mastectomy patients with stubborn pain, while others responded to electrodes implanted in their spinal column.
However, the study also said there was no “current gold standard” for treating post-mastectomy pain, and there was a lack of high-level evidence about which treatments were effective.
Baylor anesthesiologist Krishna Shah, a co-author of the report, said that while many patients eventually find a treatment that helps them, it often takes “a bit of trial and error” to identify what works for each person.
And sometimes we just can’t find it.
Susan Dischel, 67, said after undergoing a mastectomy and reconstructive surgery for breast cancer in 2017, she suffered from pain and burning in both shoulders for five years, identified in medical records as nerve pain. In 2022, she had another surgery to replace her breast implants to eliminate shoulder pain, but said doctors at the time warned her other pain was unlikely to improve.
Since then, she has tried prescription drugs, steroid injections, CBD oil, acupuncture, physical therapy, and treatment with a chiropractor.
None of them worked, she said, so she stopped trying.
“I haven’t been able to sleep all night since I got this,” Dishell said. “But that’s okay. It’s not the worst price to pay for not getting breast cancer.”
KFF Health News is a national newsroom that produces in-depth journalism on health issues and is one of our core operating programs. KFF – An independent source for health policy research, polling, and journalism.
