Post-Mastectomy Pain Syndrome
It’s normal to have pain as you recover from a mastectomy or lumpectomy. But if you have pain in the arm, armpit, or chest area that lasts for months or even years after surgery, you may have post-mastectomy pain syndrome, or PMPS.
The definition of post-mastectomy pain syndrome varies slightly among doctors, but most agree that nerve pain that lasts for more than three months after breast cancer surgery is PMPS. The syndrome was first noticed in people who had mastectomies, but doctors now know that people who have a lumpectomy sometimes experience this chronic pain, too. It’s thought to happen when nerves in the chest and armpit are cut or damaged during surgery. Numbers vary, but it’s estimated that up to 50% of people who have breast cancer surgery develop post-mastectomy pain syndrome.
“In its basic sense, [post-mastectomy pain syndrome] is chronic pain … that continues after the normal healing time for breast cancer surgery,” explained Michael Stubblefield, MD, on The Breastcancer.org Podcast. Stubblefield is medical director of cancer rehabilitation at the Kessler Institute for Rehabilitation and national medical director for Select Medical’s ReVital Cancer Rehabilitation Program.
Post-Mastectomy Pain Syndrome: What It Is and How It's Treated
With guest Michael Stubblefield, MD
Oct 30, 2018Side Effects
Post-mastectomy pain syndrome symptoms
Post-mastectomy pain syndrome can take on many forms. Phantom breast pain, which is caused by nerves that were cut when a breast was removed, is one type that falls under the larger umbrella of post-mastectomy pain syndrome. PMPS also can feel like a shooting, stabbing, or burning pain; tingling or a pins-and-needles feeling; numbness; or itchiness. The pain may be in the chest wall, the armpit, the arm, the surgical scar, or the shoulder. The skin in those areas also may be extremely sensitive. For instance, putting on clothes or having a light breeze blow across an affected arm might be enough to cause pain in some people.
“Any time you damage a nerve, you’re going to have the potential of having pain [along] that nerve,” Stubblefield said. “Sometimes this is caused by what we call neuromas, which are abnormal growths at the stump where the nerve was cut. Sometimes the pain is caused by muscles that are spasming in response to the nerve [being cut].”
When a muscle spasms because a nerve has been cut during breast cancer surgery, it can squeeze the chest wall or cause cramping in the chest wall or in the armpit.
Community member elizabethart described PMPS as repeated stabbing pain. “My worst pain is under my left shoulder in my back, with a stabbing pain that comes on strong then abates for 20 or so seconds, then feels like being stabbed again…It ramps up quickly, and anything done with my arms brings it on.”
Nerve pain lasts so long because damaged nerves take a long time to regrow. The rate is usually about 1 mm per day, or about an inch per month, so it can take a year or more for nerves to heal. If the space between the ends of the cut nerves is large, the nerves may never regrow.
Community member shaneoak has been living with PMPS for several years. “I’m seven years out from my BMX [bilateral mastectomy] and the itching and random ‘zings’ of pain are still a daily annoyance, as is the shoulder blade pain. Itching goes through the roof after a cocktail, so no relief there.”
How is post-mastectomy pain syndrome diagnosed?
Sharp or throbbing pain after breast cancer surgery is considered “normal.” The key is that the pain gradually gets better over time.
If the pain lasts for more than three months after surgery, then doctors usually consider post-mastectomy pain syndrome.
“Now, it needs to be differentiated from other things that hurt after breast cancer, like shoulder dysfunction, pain from axillary cording, and a number of others,” Stubblefield said.
Still, not all surgeons and oncologists are familiar with PMPS and you may have to advocate for yourself and ask for a referral to a cancer rehabilitation specialist or a pain specialist.
Who’s most at risk for post-mastectomy pain syndrome?
Frustratingly, doctors don’t know who will develop post-mastectomy pain syndrome and who won’t. But studies suggest that younger people and people who have total mastectomy have a higher risk of PMPS. Other possible risk factors include having more lymph nodes removed during axillary lymph node surgery, having radiation therapy in addition to surgery, and having a history of chronic pain or depression.
“You cannot predict who’s going to get this,” Stubblefield said. “You can have the same surgeon doing the same exact surgery, and one patient gets it and the other 10 don’t. And there’s no good rhyme or reason that we can ascertain … what the cause is. More surgery is probably associated with a higher risk, but not always.”
Can post-mastectomy pain syndrome be prevented?
Studies have looked at different ways to prevent post-mastectomy pain syndrome and most have had mixed results. Some studies show that taking the nerve pain medicine Lyrica (chemical name: pregabalin) before surgery and using nerve blocks – an injection of numbing medicine near the painful nerves — and mixes of anesthetics and painkillers during surgery can help, while others found no such evidence.
Also, resistance training, myofascial release techniques (special manual therapy to release tight muscles and the tissue surrounding the muscle called the fascia), and physical therapy after surgery helped people in some studies — but made no difference in others.
One very small study of 46 women found that EMLA cream, a topical cream that contains the anesthetics lidocaine and prilocaine, may help. Women who had EMLA cream applied to the chest area before any incisions were made, when the incisions were closed with stitches, and then once a day for four days after surgery had less and milder chronic pain at three months than people who didn’t receive EMLA cream. But more research is needed before the cream is widely recommended.
How is post-mastectomy pain syndrome treated?
If you’re having pain after breast cancer surgery that lasts longer than three months, it’s a good idea to talk to your doctor right away. There are treatments that may help make you more comfortable.
Most of the treatments for PMPS are similar to the techniques studied for prevention: specialized physical therapy, medicine, and topical anesthetics. It’s important to know that a technique that eases post-mastectomy pain in one person may not help another. You may need to try several options until you find one that works for you.
If you’re not getting relief, you may want to ask for a referral to a doctor who specializes in pain management or cancer rehabilitation, as they may be more familiar with PMPS than your oncologist or surgeon.
Physical therapy
According to Stubblefield, the first line of treatment is usually myofascial release.
“Both the muscle and the fascia can get damaged and scarred during any surgical procedure, particularly mastectomy, reconstruction, lymph node dissection,” he explained. “If you picture in your head a wire that is bound in concrete and the concrete doesn’t move, the myofascial release is trying to get all of the concrete, the hard tissue around that wire, to soften up.”
Specially trained physical therapists use this technique to soften the surrounding tissue, which reduces pressure on the nerve and can help ease some muscle spasms and pain.
Medicine
Medicines, including Lyrica, Neurontin (chemical name: gabapentin), Cymbalta (chemical name: duloxetine), certain antidepressants, and muscle relaxants also may be recommended for the pain. These medicines can help ease nerve pain in some people, and most, with the exception of Cymbalta, also can help ease muscle spasms.
“I had a huge turnaround with my PMPS when I started taking [the antidepressant] amitriptyline (25mg) nightly,” wrote Community member iluvmyfam. “It helps me get a good night’s sleep, which then helps me deal with pain, neuropathy, migraines, and daily living. I was so stressed from not sleeping well and being in pain 24/7 that I was miserable. Now, I find that the amatryptaline helps by giving me a break from the pain. It resets my pain tolerance.”
Topical capsaicin
Capsaicin is the active compound in chili peppers and gives them their spicy taste and distinctive smell. Capsaicin cream works on nerve pain by overstimulating nerves until they no longer send pain signals to the brain. While it can help with nerve pain, some people report that capsaicin cream causes an intense burning sensation in the area where it’s applied.
Surgical procedures
Surgery to manage PMPS is often done by a pain management doctor, rather than an oncologist. If physical therapy, medicine, and topical creams haven’t helped, you may want to ask for a referral to a pain specialist.
Nerve blocks: A doctor locates the ends of the cut nerves and injects them with lidocaine or a similar medicine and a small amount of steroid. This helps decrease inflammation and block pain signals.
Botox: If a muscle is spasming, a botox injection can relax the muscle and ease the pain. This is a common off-label use of botox, but some doctors may not offer it.
Fat grafting: Taking fat from another part of the body and injecting it into the breast area has been shown to help ease PMPS in some people. It’s a relatively new technique and is thought to work by cushioning the area, as well as reducing inflammation.
Nerve destruction surgery: Research suggests that surgical techniques to destroy nerves using heat, cold, or chemicals can help ease pain. Damaging or destroying a nerve can stop or reduce the pain signals it sends to the brain.
Complementary therapy
Guided imagery, music therapy, journaling, acupuncture, meditation and other mindfulness therapies, yoga, and progressive muscle relaxation all can help ease PMPS in some people. These are usually done in combination with each other and/or alongside other treatment strategies, like medication and physical therapy.
“When my pain level goes up two points [on the pain scale], I take a break and try different mechanisms (meditation, prayer, elevating my arm, nap, stretching, etc) until my pain level goes down two points,” shared community member iluvmyfam. “It is not always feasible, but it works most of the time.”
How post-mastectomy pain affects your mental health
A number of studies have shown that PMPS can affect your mental health as well as your physical health.
In 2023, 24.3% of adults in the United States had chronic pain, according to the Centers for Disease Control and Prevention. That’s about 81 million people. A study found that this group makes up about half of all people with anxiety and depression symptoms.
Chronic pain like PMPS is deeply intertwined with mental health: Each can make the other worse. Research suggests that mental health issues and chronic pain have similar biological mechanisms, which contributes to their interconnectedness. For example, depression can make a person more sensitive to pain.
Living with a condition that is overlooked and misunderstood can take a toll on your mental health. Until recently, many surgeons weren't familiar with the PMPS, and the specialists who were knowledgeable about it — such as pain management and cancer rehabilitation experts — weren't always easy to find. As a result, many people lived with pain for months and years without answers. Some eventually stopped mentioning it to their doctors and suffered in silence.
Community member serendipity09 shared what it’s like to live with invisible pain. "I hear at least once a week at PT or when at the cancer clinic in the waiting area, ‘well you look great, you shouldn't be here.’ I just kindly smile through my mask and think to myself, if you only knew the pain I'm in along with all the other bs."
If you have post-mastectomy pain syndrome, it’s important to take care of your mental health while treating your pain. In some cases, antidepressant medicines, like Cymbalta, and anticonvulsant medicines, like Lyrica and gabapentin, can help treat both conditions.
Tips on managing PMPS from the Breastcancer.org Community
Members of the Breastcancer.org Community offer their tips for managing post-mastectomy pain syndrome.
“I have tried CBD cream and arnica cream to dull the pain when it arrives. Just does not last long.” — lezza13
“My best relief, for a bit, comes from wearing a breast binder, engaging in journaling, mind-numbing TV, leisurely walks with my dog, photography, and meditation.” — everymoment
The one thing that I know that helps me is being in the water (pool) and walking …” — serendipity09
“What has worked? Jamming something under my scapula can somewhat ease the pain slightly. I live in my TENS [Transcutaneous Electrical Nerve Stimulation] unit, though putting it on my back/shoulder accurately myself is a PITA.” — elizabethart
“I’ve tried several cbd oils that did not work. However, the oil with medical marijuana oil that contains THC has helped me. Unfortunately, I started getting terrible headaches.” — BarbaraT54
“I've been having some success with Pain Away spray, which contains the herbs arnica, rosemary, and eucalyptus. It seems to give more relief than the Ice Gel I was using.…” — aussie-cat
“Having done everything — PT and massage, creams, Botox, acupuncture, nerve blocks, spinal block, revision surgery, Lyrica, and now the gabapentin — I am absolutely the patient docs hate. Thing is, I did everything that wasn't meds before finally trying the meds. And even now I'm on a super low dose of Gabapentin and doing hypnosis in the hope I can stop meds eventually.” — kignyc
“I take gabapentin … 1200 ml daily and it helps with the pain but it doesn’t go away completely. I also use magnesium cream … that ‘calms’ the pain when it’s screaming … but it doesn’t last for very long. I just started cold laser therapy, first three treatments I could tell immediately ‘something’ was happening and it felt somewhat better. Then two days later it was screaming again, so Dr. set the therapy for inflammation, and it did feel better after that treatment ... so I’m going to keep trying them and see if it will help with the pain long term.” — Calee65
This content was made possible, in part, by support from AstraZeneca.