Image Credit: “Breast Cancer Awareness Walk/Run — U.S. Army Garrison Humphreys, South Korea –19 October 2012” by USAG-Humphreys is licensed under CC BY 2.0

Post-Mastectomy Pain Syndrome: Breast Cancer’s Little Known Marathon

What anyone facing breast surgery needs to know.

This article is inspired by a sisterhood that helped save my life. A few months ago I joined an online Facebook group for survivors experiencing Post-Mastectomy Pain Syndrome (PMPS). PMPS is a little-known and extremely painful complication that can occur after breast surgery. For many women, it is misdiagnosed, ignored, and considered a permanent condition with no known cure and limited treatment options. Though my support group has more than 1,000 members, none of us were ever warned that our surgeries may result in PMPS and all of us seem to agree that this syndrome has changed our lives.

I asked my PMPS sisters what they would like to see included in this article. The quotes that head the sections below represent our collective experiences in our battle with PMPS. I provide examples from my personal journey and offer a call to action for the medical community as an appeal for more honest and complete pre-surgical information, a request to review surgical techniques to see if improvements can be made to help avoid this complication, and as a plea to research and incorporate cutting edge treatment options beyond pain medications to change (and possibly save) our lives. Here’s what we want you to know.

“It can happen after any breast surgery…” ~E.W.

The word “mastectomy” in the name of PMPS is a misnomer as this condition may occur after any type of breast surgery. My PMPS symptoms were the result of a breast-sparing lumpectomy surgery, but other women experience PMPS after mastectomy and/or breast reconstruction surgeries. Other types of breast/chest trauma may cause PMPS too.

In America, breast cancer is the most commonly diagnosed cancer in women. According to Breastcancer.org, 30% of new cancers that will be diagnosed in women in 2021 will be breast cancers. The report Breast Cancer Facts & Figures 2019–2020 estimates that more than 300,000 women and more than 2,000 men received a new diagnosis of breast cancer in 2019. More than 100,000 women undergo some form of mastectomy (complete unilateral or bilateral, breast-sparing lumpectomy, contralateral prophylactic) each year according to Brigham and Women’s Health.

I was diagnosed in 2020 with breast cancer after a small tumor that measured less than 2 cm was discovered on a mammogram. Because the cancerous area was small and genetic testing showed that I was not predisposed to any cancers, I had a lumpectomy plus removal of two sentinel lymph nodes rather than a mastectomy. My tissue pathology reports indicated that the edges of the removed tissue and the lymph nodes were all clear of cancer. I was lucky to have caught my cancer early and, as my surgical oncologist promised, I had been treated to cure it. Post-surgery, I was cancer-free and about a month’s worth of radiation plus five years of Tamoxifen medication would further minimize my risk of recurrence down to a single-digit percentage. I’d won my fight with cancer, but, unknown at the time, my battle with PMPS had just begun.

“We all aren’t nuts…the pain is real.” ~P.A.

As a healthcare professional and educator, it has always bothered me when patients describe feeling like they are not being heard. Through my PMPS online group, I read too many accounts of women in real need being ignored, not believed, or, worse, made out to be imagining things. We aren’t.

Prior to my surgery, I was not in any pain. After my surgery, I’ve suffered 9 months of constant pain. What does it feel like? Like a knife that is on fire is stabbing me repeatedly in my right breast, shoulder, and the space between my right shoulder blade and my spine. Like burning liquid is shooting through my armpit, down my right arm, and into the middle of my palm. Like a burning whip is lashing at the spaces between my right ribs. Like the lightest touch is scratching off the skin of my right chest, ribs, shoulder, and arm. Like my right breast cramps itself into solid rock. That’s how my pain feels and with flares, all of these areas burn and throb at the same time.

Other women in my PMPS support group have similar symptoms as mine. But some have additional ones such as uncomfortable pins and needle sensations, lymphedema, and something called an “iron bra” which feels like a vice grip on your chest. We experience interrupted sleep, interrupted work, interrupted relationships, interrupted lives. The toll is physically, emotionally, and mentally exhausting to the point that some of us have felt suicidal. We are not crazy. We are in severe pain and we want our lives back.

“It affects our lives and…when it becomes chronic, we still suffer but everyone else has moved on from caring…” ~M.O.

I have been very blessed to have incredible support systems in place. My family was and remains willing to help me whenever needed. My job is very accommodating and Covid turned out to be a perverse stroke of luck as it has enabled me to manage my pain mostly in the privacy of my home. Pain medications help me get through any online or in-person meetings.

My husband bears the brunt of the caregiving and concern. I know it has been difficult for him to see me in so much pain. We’ve been married 27 years and were a healthy, vibrant, active couple before the surgery. We both thought we would get our lives back within a reasonable time period for post-op healing. Our intimacy has suffered as he has been afraid to touch me and, truthfully, during my worst flares I have been afraid of him touching me because it would cause more pain. We are grateful for our friendship and years of supporting each other. We communicate and are doing the best that we can until I can find a fix for this.

Many people have never heard of PMPS and are unaware of what it is. Also, though organizations such as the American Cancer Society estimate anywhere from 20–30% of breast cancer patients may experience PMPS, many women who have breast surgery do not end up with this complication. Thus, people (including doctors and caregivers) do not associate PMPS as a reasonable part of the breast cancer and surgery experience. In fact, many physicians are completely unfamiliar with this diagnosis, so patients are sometimes ignored, sometimes misdiagnosed, and sometimes waved off as incurable. As one of my PMPS sister’s wrote, “We are often left with no answers and no help.”~R.T. Even among our family and friends, my PMPS sisters and I have regularly heard phrases like, “Well I had breast surgery and that didn’t happen to me.” But it did happen to us and we deserve to be helped.

“There is no cure and no fix that works for all of us.” ~T.V.

Most treatment options for PMPS center around pain management, improving range of motion for the arm/shoulder, and controlling muscle spasms. Psychological treatments to manage depression and anxiety may be part of a treatment regimen as well. I take prescribed medication to help with nerve pain, muscle relaxers, and opioids. I manage when and what medications I take to ensure I am able to function for my job as some of the medication causes dizziness and fatigue and…oh yeah…the danger (and stigma) and possibility of addiction. To the outside world, my PMPS has been like one of my online sisters described, “It’s ‘invisible’ pain. I look just fine but am in absolute misery 24/7.” ~S.T.

In addition to my medications, I had one round of physical therapy that helped me hold my arm in a position over my head for my 20+ days of radiation treatments. A few months later I had another 3 months of physical therapy that included dry needling to help desensitize my skin and release tension in the muscles that were compensating for my painful areas. During that time, a pain specialist performed a procedure whereby he injected a steroid into my neck/cervical spine to see if it would control inflamed nerves that can cause radiating shoulder-arm-hand pain similar to what I was describing to him. That did not work as my PMPS was caused by surgical nerve damage and not by spinal disc damage. But, that treatment is what that particular physician understood and was trained in. He wanted to help me. He had never heard of PMPS, so he defaulted back to what he knew.

Over the last 9 months, I have asked 6 different doctors across 5 specialties and none of them could explain what was happening to me. A 7th doctor finally diagnosed me as having PMPS. I will never forget him waving his hand and saying, “This is permanent. There is nothing you can do except take pain medication.” When I told him that my goal was to get to a point where I did not have to take pain medication anymore, he said, “Well, you can always refuse treatment.” He was not going to help me find a solution. I haven’t been back to see him since.

Other women with PMPS report taking similar medications to what I am taking. Some have tried other treatments such as CBD oil, numbing creams, lidocaine patches, acupuncture, antidepressants, etc. The list of medications and alternative therapies we are willing to try is very long and is an indication of our desperation to find something that will help end our suffering. What works for one person, may not work for another and these variations in response to treatment need to be considered.

“I often feel judged for being a cancer survivor who is not thriving in life. I have so much damage…” ~J.R.

I have only been dealing with my PMPS pain for 9 months. There are others who have been suffering for years and even decades. Sometimes when I describe my pain to others, they say, “Well…at least you are alive.” To that, I answer: Yes, and I’d like to be able to enjoy my life without being in excruciating pain.

Other women report hearing similar comments. One of our PMPS support group sisters even had a doctor tell her she should be grateful she is alive to complain about her pain. Let’s get something straight.

We understand that we had breast cancer. We know that not treating it would most certainly mean death for us. Some of us, like me, lost our mothers (grandmothers, aunts, friends…) to breast cancer. I was the one giving my mom morphine as she lay in hospice in my home at her passing. We do not need to be told to be grateful. Our suffering does not have to be hidden or downplayed just because other people do not understand that cancer steals life in more ways than one.

“PMPS needs to be discussed before surgery…as part of informed consent…and family members need to be aware of it also.” ~D.M.

What has been truly surprising is the number of women in our support group who had not heard of PMPS before their surgeries. I remember distinctly that my surgeon discussed the possibility of complications that included nerve damage, but it certainly was not described to me as something that may be life-changing, debilitating, or permanent.

Other women have reported feeling like their doctors were dishonest with them by not telling them about PMPS. One of our sisters asked us if we would have done anything differently if we had a full understanding of PMPS prior to surgery. Some wrote that their surgery saved their lives, so they would not have changed anything. Some wrote that they would have opted for a lumpectomy instead of a mastectomy. Some wrote that they would have opted out of follow-up reconstructive surgery.

For me, I am not sure which part of my surgery caused the most nerve damage. I would have definitely had the lumpectomy and lymph nodes removed. But I am unsure if I would have had the reconstruction surgery which was described to me by my plastic surgeon as “rearranging the tissue in the breast to fill in the hole left by removing the cancer.” I believe both my surgical oncologist who removed the cancer and my plastic surgeon who performed the reconstruction tried to help me. I recognize that the surgical oncologist saved my life. Still, I can’t help but wonder if I had skipped the reconstruction surgery, would it have helped avoid my PMPS? I will never know the answer to that. But I deserved to be fully informed so I could consider all of my options in light of the risks. Other women deserve that too.

“Surgeons need to learn to do more to ensure the life they save is worth living.” ~S.M.

As I sit this evening typing in the finishing touches for this article, I am looking forward to tomorrow when I will have surgery again. This time, it is for a corrective procedure that may be able to help reduce or completely eliminate some of my pain. That’s right. There’s a treatment option that may help me and others.

It is still being studied but one of our PMPS sisters found Dr. David L. Brown, a plastic surgeon with University of Michigan Medicine. He has taken techniques used to help nerve pain experienced by amputees and applied them to help breast surgery patients with chronic PMPS. He and other innovative physicians are examples of what can happen when doctors listen closely to their patients and join them in their quest to find a solution. I plan to write again about the outcome of my surgery, my healing process, and any effects it may have on my PMPS. If my surgery tomorrow helps me get my life back, then it will have been worth it.

I hope this article is shared widely and will help other women who are diagnosed with breast cancer better understand and navigate their options. I hope this article helps women who have been suffering from PMPS feel like they are not alone. But mostly I hope this article helps everyone who is focused on managing breast cancer realize that does not only involve the search for a cure. That race is well-known. But some of us have a whole other marathon to run.

Leigh Giles-Brown is an ultrasound instructor, wife, mother and breast cancer survivor.