Post Mastectomy Pain Syndrome – It Is Real and What To Do About It
If you have had a mastectomy or lumpectomy and/or breast implants and are experiencing some ongoing pain and discomfort that has nothing to do with the normal recovery period for surgery – we’re talking pain and burning that lasts months and even years after surgery – it is VERY real, it has a name, and in this article I’m going to give you some suggestions for what to do about it.
It is a reasonable expectation that pain can be experienced after major surgery like a mastectomy or lumpectomy, although there are ways to minimize this kind of pain. See my article Your Breast Surgery Recovery – Using Arnica to Minimize Bruising and Swelling. But pain which persists beyond a normal period of healing is considered to be chronic and is a whole different thing altogether. There is a term for it, Post Mastectomy Pain Syndrome, and despite the title, it can happen after lumpectomy surgery as well.
What is Post Mastectomy Pain Syndrome (or PMPS)?
PMPS is categorized as chronic pain that occurs after surgery for breast cancer including lumpectomy, mastectomy, and axillary lymph node dissection (this involves removing lymph nodes in the underarm area) and persists beyond what could be considered a normal period of healing.
A number of my coaching clients have told me they have PMPS and it, quite simply, is driving them nuts. The pain and discomfort experienced from PMPS can be any of the following:
• a shooting pain
• a burning sensation
• a stabbing pain
• an electric shock type of pain that accompanies a constant burning and aching feeling
• a throbbing, aching pain
There are a number of studies on PMPS and they indicate that anywhere from 20 to 68 percent of breast cancer survivors who have had mastectomy, lumpectomy or axillary clearance experience PMPS. That’s a huge number! PMPS typically begins in the period immediately after surgery, but it can also wait up to several months after surgery to appear and persist for a number of years. For some, the condition goes away on its own, but for others the pain is constant, and it wears away at their normally good nature, making them feel tired, despondent, depressed and grouchy.
What Causes PMPS?
There are several different things which can cause PMPS:
1. During lumpectomy surgery, mastectomy surgery, and/or axillary lymph node dissection, sometimes a patient’s intercostobrachial nerve (see photo below) and/or other sensory nerves in the underarm and breast areas are injured. Removal of a tumor located in the upper, outer quadrant of the breast (near the underarm) also increases risk of PMPS because the nerves in this region are more easily damaged.
2. Formation of scar tissue from the surgery can also be a cause for PMPS. Interestingly, studies have shown that PMPS occurs more often after lumpectomy than after mastectomy.
3. Treatment with radiation or chemotherapy after surgery can also cause PMPS.
Symptoms of PMPS
Survivors typically complain of pain in the upper arm, the underarm, the shoulder and even the chest wall (all are areas enervated by the damaged intercostobrachial nerve). The pain experienced can range from mild and manageable, to being severe enough to interfere with daily activities. It can cause impaired movement of the affected arm, and can lead to not only pain but stiffness, and a condition referred to as “frozen shoulder”. These symptoms can be fairly continuous or intermittent. One client said hers was the intermittent kind, she would feel better for a few days and think it was finally gone, only to have it return full force for no apparent reason. The pain of PMPS can worsen by doing seemingly simple things such as household chores or even gentle stretching.
Easing the Symptoms of PMPS
It is important to carefully manage PMPS – not only for relief of the aggravating pain and other symptoms, but also to reduce the negative impact it can have on your quality of life. Here is a list of things that can help:
1. Essential oils – using pain relieving and anti-inflammatory essential oils like wintergreen, marjoram, peppermint, copaiba, ginger and a few others topically on the area of pain or other sensations can help to relieve the pain, inflammation, and settle the nerve down until it can repair. I would try this avenue first. Please ensure you use therapeutic grade essential oils from a reputable supplier.
2. An anti-inflammatory diet is highly recommended to ease the attendant inflammation in the body. See my article Anti-Inflammatory Foods That Help Fight Breast Cancer for some recommendations.
3. Nonsteroidal anti-inflammatory drugs. While it isn’t recommended to use these daily over a long period of time, the occasional use of nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen can help to relieve chronic pain and inflammation.
4. Deep tissue massage therapy is beneficial in management of PMPS because it can help to ease inflamed tissues, reduce scarring and adhesions, and restore movement to the affected limb. Indeed, one Korean study reported in 2014 found that trigger points that had developed in two particular shoulder muscles in post-mastectomy patients were responsible for their pain syndrome and injecting the trigger points with ultrasound relieved that pain.  A well-trained deep tissue massage therapist will know how to do this manually, without the need for ultrasound, but both can be helpful.
5. Pulsed, high intensity laser therapy. One small 2015 Egyptian study with 61 women found that treatment with pulsed, high intensity laser therapy increased range of motion of the affected shoulder, as well as quality of life for the women who underwent this form of therapy. 
6. Acupuncture. We have a couple of studies that indicate acupuncture can be very beneficial for helping to relieve some of the pain and discomfort from PMPS. It’s certainly worth a try — I know a few who have done very well with regular acupuncture treatments. 
7. Nerve block. A small study published in Cancer Research in 2013 found that a nerve block employing a combination of bupivacaine (an anaesthetic) and dexamethasone (an anti-inflammatory corticosteroid) was an effective potential treatment option for chronic neuropathic pain after mastectomy. 75 percent of patients receiving this nerve block injection reported persistent relief after one injection. 
The least exciting treatment option, but sometimes helpful for some patients in cases where pain is severe, is the use of antidepressants and opioids to relieve neuropathic pain. These drugs must always be prescribed by a doctor and carefully monitored.
For some survivors, just knowing that the pain they are experiencing is real and not imagined can be comforting. Many have been told by their surgeons that there is no apparent reason for the pain they are experiencing and are sent on their way. If you’ve been told that, march down to your surgeon’s office with this article and have him/her read the research links below.
 Application of ultrasound-guided trigger point injection for myofascial trigger points in the subscapularis and pectoralis muscles to post-mastectomy patients: a pilot study – http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3990076/
 Long-term effect of pulsed high-intensity laser therapy in the treatment of post-mastectomy pain syndrome: a double blind, placebo-control, randomized study – http://www.ncbi.nlm.nih.gov/pubmed/26115690
 Herbal Medicine and Acupuncture for Breast Cancer Palliative Care and Adjuvant Therapy – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3694462/
 Abstract P3-10-03: A simple intervention to relieve chronic neuropathic post-mastectomy pain – http://cancerres.aacrjournals.org/content/73/24_Supplement/P3-10-03.abstract
Post-mastectomy pain syndrome: incidence and risks – http://www.ncbi.nlm.nih.gov/pubmed/22377590
Prevalence of post-mastectomy pain syndrome and associated risk factors: a cross-sectional cohort study – http://www.ncbi.nlm.nih.gov/pubmed/24144570
Clinical and neurophysiological evaluation of persistent sensory disturbances in breast cancer women after mastectomy with or without radiotherapy – http://www.ncbi.nlm.nih.gov/pubmed/27456370
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That’s wonderful information! Many people at my church sell essential oils.
Finally, a place that treats pain seriously. My numerous doctors have basically patted me on the head, said dear dear, and thrown pills at me. My pain continues to make me faint. I have undergone intrusive and uncomfortable studies for vasovagal syncope, sleep apnea, heart problems, and epilepsy, et al…….The medical establishment has not addressed the root problem. It is the pain that is making me sick. My inclination is to believe that I would have had no other complications if the pain had been successfully addressed in the first place. I have been in continuous crushing pain for 2 years. I am still doing research. I hope that some of the information you have provided will be useful to a surgeon I am seeing tomorrow.
I’m glad we connected. The pain you are experiencing is indeed all too real (no need for me to tell you that!) and I too hope that the surgeon you see takes you seriously and finds a resolution for you. Sending far-away hugs.
Thank you so much for this information and proving to my family that I’m not making this up. I was almost to the point of thinking that I was crazy. I am taking this information with me next week to my physical therapy that they are just now starting on my right arm after 2015 since I kept telling them that something was going on and driving me up the walls.