Quand Leigh Guiles-Brown underwent a mastectomy as part of her breast cancer treatment, she expected that after a couple of months of steady recovery, she would officially move from “patient” to “survivor” and get her life back. Instead, her life post-surgery became months of constant pain. She describes the feeling as:
“…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…”
In her struggle to find answers for this common, but little-known breast surgery complication, she visited seven doctors before receiving a diagnosis: post-mastectomy pain syndrome. However, this doctor informed her that there was no cure, and it wasn’t until she traveled out of state for a specialized surgery to repair damaged nerves caused by her mastectomy that she experienced relief.
But what is post-mastectomy pain syndrome (PMPS), and with 100,000 annual mastectomies in the US each year, why isn’t this condition a household name?
What is post-mastectomy pain syndrome (PMPS)?
Selon la Société américaine du cancer, PMPS is defined as persistent nerve pain in the chest wall, armpit, or arm following breast surgery. Nerve pain can include numbness, itching, tingling, hypersensitivity, and different pain sensations (burning, shooting, etc.). Since this can involve any breast surgery (such as lumpectomy, breast reduction, breast reconstruction, and cosmetic surgery), post-breast surgery pain syndrome has been proposed as a more accurate term [1].
According to the American Cancer Society, PMPS is defined as persistent nerve pain in the chest wall, armpit, or arm following breast surgery. Nerve pain can include numbness, itching, tingling, hypersensitivity, and different pain sensations (burning, shooting, etc.). Since this can involve any breast surgery (such as lumpectomy, breast reduction, breast reconstruction, and cosmetic surgery), post-breast surgery pain syndrome has been proposed as a more accurate term.
By definition, PMPS is the result of nerve injury and/or the formation of a neuroma (nerve tumor), but (as this 2021 narrative review explains) a mastectomy can cause other painful complications related to connective tissue scarring or inflammation [1,2]. Because PMPS and other complications, like frozen shoulder and shoulder impingement syndrome, can have overlapping symptoms like pain, loss of strength, and limited shoulder mobility, and can be present at the same time, it can be difficult to identify the true source(s) of the pain [2].
In an additional 2021 analyse documentaire, authors Maureen Beederman and Jonathan Bank found that the rates of developing PMPS ranged from 8%-9% to 70%, with rates most commonly around 50%. In musing why this apparently common complication hasn’t received more attention, the authors state, “In the past, when concern was predominantly on patient survival, this pain was often considered acceptable [1].” Translation? “Well, at least you’re alive.” But, given that breast cancer survival rates have tripled in the past 60 years, mastectomy is no longer just one of the painful last chapters in a cancer patient’s life. Now, it may be the start of decades of cancer-free living in which chronic pain becomes a serious quality of life issue.
Causes and risk factors for post-mastectomy pain syndrome (PMPS)
During breast surgery, the nerves in the chest area are vulnerable to injury, especially the intercostalbrachial nerve, which runs through lymph nodes that may need to be removed during surgery. As tissue is cut, rearranged, and reconstructed during surgery, nerves can get cut, pinched, stretched, or surrounded in scar tissue. Having greater awareness of nerve anatomy and addressing injured nerves during the surgery could help curb postoperative pain. However, even if the surgeon is very skilled, scar tissue and damage from radiation can cause indirect injury to the nerves [1].
According to the American Society of Regional Anesthesia and Pain Medicine (ASRA), there are a variety of risk factors for PMPS. Patients who are younger, who undergo full axillary lymph node dissection (rather than the more conservative sentinel lymph node biopsy), who have more advanced cancer, and those who receive radiation treatment are at a higher risk of developing PMPS. Patients who had anxiety or depression prior to surgery are also at higher risk. In this 2020 review on pain and mood disorders, researchers found that mood disorders and pain walk a two-way street in which mood disorders and pain tend to worsen each other [3].
Patients who are younger, who undergo full axillary lymph node dissection (rather than the more conservative sentinel lymph node biopsy), who have more advanced cancer, and those who receive radiation treatment are at a higher risk of developing PMPS. Patients who had anxiety or depression prior to surgery are also at higher risk.
Beederman and Bank add high BMI and having pain prior to surgery to this risk factor list from their literature review [1]. The presence of pain prior to surgery is also a risk factor in developing phantom limb pain in amputees, and pain management prior to surgery is considered an important preventative measure. It stands to reason that this approach may be helpful in preventing phantom breast pain as well.
There is also an association between pain level immediately after surgery and developing chronic pain. However, the data around surgery type (breast-conservation vs. mastectomy), reconstruction, and type of reconstruction was contradictory, and more research is needed to understand how the type of surgery impacts PMPS [1].
Treatment options for post-mastectomy pain syndrome
Fortunately, there are a few areas of research showing promise for treating PMPS.
Physical therapy
Beederman and Bank start physical therapy with all of their PMPS patients and continue it throughout the treatment process [1].
Pain begets pain. When part of the body is injured, it’s natural to alter posture and movement to protect the injured area. This can lead to weakened muscles, overcompensation in other muscles, and increased tension that increases pain. A physical therapist can release this tension, retrain muscles, improve mobility, and help improve scar tissue mobility. Especially since there may be more than one pain issue going on at the same time, physical therapy is a crucial starting point in dealing with chronic pain after breast surgery.
Addressing anxiety and/or depression
Similarly to physical therapy, addressing mood disorders doesn’t cure nerve injuries, but mood disorders can worsen pain perception and pain perception can increase anxiety and depression. Addressing the psychological and emotional side of cancer, surgery, and post-operative pain is important for overall wellbeing.
Chronic pain can take a heavy toll on mental and emotional health as patients deal with the pain itself along with the interruption of daily life, potential feelings of isolation, poor sleep, and fears of cancer recurrence.
Médicaments
A 2023 review of PMPS treatment highlighted a number of medications effective in reducing PMPS pain. Low dose antidepressants such as Amitriptyline and Venlafaxine have been shown to decrease PMPS pain in small, randomized control trials by improving brain pain regulation.
Anti-convulsants (seizure medications) including Gabapentin and Pregabalin help calm overexcited nerves and have been shown to decrease pain intensity in PMPS.
Capsaicin (the chemical that makes peppers spicy) can be applied topically as a cream to block pain signals to the brain and has been shown to provide significant pain relief in PMPS (although it does burn when applied, as one might expect).
The authors note, however, that although initial research is promising, all of these treatments require more study to better understand dosing and side effects to establish best practice in PMPS management [4].
Nerve blocks
A doctor can also inject a numbing agent and/or steroid directly into the suspected injured nerve; this is called a nerve block and is the technique used to do an péridurale. As with Leigh Guiles-Brown’s experience, short-term nerve blocks can be used to identify which nerve is the problem; after her injured nerve was identified, it was then surgically repaired. A 2020 retrospective study on nerve blocks found that nerve blocks can provide significant pain relief for months, most commonly for 2-3 months at a time [5].
Patients can also see if a Unité TENS can temporarily block pain signals for pain relief.
Chirurgie
Beederman and Bank state that their preference is to always exhaust noninvasive treatments first, since surgery always carries some risks. However, if symptoms are not improved with other treatments and they can be reasonably sure that a nerve injury or neuroma is the culprit, a surgeon can remove scar tissue, remove a neuroma, or “rehome” the end of a cut nerve into nonscarred tissue or a sensory nerve [1].
Conclusion
For many women (or the rare man), mastectomy marks the end of a cancer journey. But for the tens of thousands of women presumably affected by PMPS, mastectomy is the start of a new and arduous chapter. A new chapter that is less visible, has fewer answers, may interfere more with daily life, and may come with less support than the original cancer journey.
For many women (or the rare man), mastectomy marks the end of a cancer journey. But for the tens of thousands of women presumably affected by PMPS, mastectomy is the start of a new and arduous chapter. A new chapter that is less visible, has fewer answers, may interfere more with daily life, and may come with less support than the original cancer journey.
And as more and more women become breast cancer survivors, the real and treatable pain of post-mastectomy pain syndrome should no longer be considered the cost of surviving cancer. In terms of cost, a 2013 analysis of PMPS calculated the cost of PMPS in the United States at over a billion dollars in office visits, medication, and productivity loss [6]. So, not only would prevention and early treatment improve the well-being of thousands of women, but research into this area would have a many-fold return on investment.
Currently, breast cancer awareness is focused on early detection. Hopefully, this awareness can expand to encompass more of what breast cancer involves, including the fact that PMPS is a real and treatable condition that women shouldn’t have to endure day after day.
Références :
[1] Beederman M, Bank J. Post-Breast Surgery Pain Syndrome: Shifting a Surgical Paradigm. Plast Reconstr Surg Glob Open. 2021 Jul 22;9(7):e3720. doi: 10.1097/GOX.0000000000003720. PMID: 34316427; PMCID: PMC8301281.
[2] Chang PJ, Asher A, Smith SR. A Targeted Approach to Post-Mastectomy Pain and Persistent Pain following Breast Cancer Treatment. Cancers (Basel). 2021 Oct 16;13(20):5191. doi: 10.3390/cancers13205191. PMID: 34680339; PMCID: PMC8534110.
[3] Antioch I, Ilie OD, Ciobica A, Doroftei B, Fornaro M. Preclinical Considerations about Affective Disorders and Pain: A Broadly Intertwined, yet Often Under-Explored, Relationship Having Major Clinical Implications. Medicina (Kaunas). 2020 Sep 25;56(10):504. doi: 10.3390/medicina56100504. PMID: 32992963; PMCID: PMC7600172.
[4] Avila F, Torres-Guzman R, Maita K, Garcia JP, De Sario GD, Borna S, Ho OA, Forte AJ. A Review on the Management of Peripheral Neuropathic Pain Following Breast Cancer. Breast Cancer (Dove Med Press). 2023 Oct 30;15:761-772. doi: 10.2147/BCTT.S386803. PMID: 37927491; PMCID: PMC10624189.
[5] Yang A, Nadav D, Legler A, Chen GH, Hingula L, Puttanniah V, Gulati A. An Interventional Pain Algorithm for the Treatment of Postmastectomy Pain Syndrome: A Single-Center Retrospective Review. Pain Med. 2021 Mar 18;22(3):677-686. doi: 10.1093/pm/pnaa343. PMID: 33155049; PMCID: PMC7971473.
[6] Visnjevac O, Matson B. Postmastectomy pain syndrome: an unrecognized annual billion dollar national financial burden. The Journal of Pain, 14S33
