Mastectomy pain: new care required

Pain after mastectomy can be none, mild, moderate or severe.

Mild pain after mastectomy can be temporary and reminding.

Moderate to severe pain can persist for years.

Persistent moderate to severe pain can completely alter a person’s choices in life.

Sleep, work, fun activities and relationships can become a real challenge.


In many studies, having a mastectomy increased the risk of chronic pain and reduced arm movement when compared to people having only a portion of the breast tissue removed.


When compared to a non breast cancer group, people after mastectomy have increased changes in the scapula position (bone at the back of the shoulder) and altered movement patterns at the shoulder girdle.


It is time to investigate the elephant in the room - impairments after mastectomy surgery must be evaluated early on and with more care. In this evaluation - comprehensive scar and adhesion (scars inside) assessment must be considered as a new and essential service to survivors with mastectomy. These services require resources, both at the clinic and by researchers, to establish what part these tissues play in an individual’s pain experience.


Imagine having a clinician assess your mastectomy scars in a comprehensive way and then developing a scar release treatment program and exercises to suit.

Many of the new patients I see, who have persistent pain, believe their pain was 100% due to nerves damaged in surgery. Yet authors from one Korean study into mastectomy pain experience found a massive 71% of the study group had pain symptoms that were not from damaged nerves (not neuropathic). I find the same thing with my patients- pain is less to do with nerve damage and more to do with scar and adhesion severity.


However, it must be recognized that nerve damage can occur during dissection surgery for breast cancer - but how is it assessed? Unfortunately, there are no medical tests available to guide doctors in knowing where 100% of pain is coming from or whether the pain experience is a bit from this and a bit from that: no blood test, no xray, no ultrasound. New technical and complex testing methods are being investigated, however we are years away from these being peer evaluated for their reliability, validity and being of help to breast cancer survivors.


One example of this is the detection of neuropathic pain in breast cancer survivors. The same Korean study from 2016 used the painDETECT® questionnaire- which relies on the individual to complete - no xray or ultrasound. This questionnaire was developed for spinal pain- not breast cancer nerve pain. In a test of this tools’s validity (2017) against other pain assessments from a non breast cancer population- the results revealed at least fair to moderate validity for assessing neuropathy pain severity.


This reasonably recent study does not provide clinicians or survivors with 100% confidence that a questionnaire can determine if nerve related pain is the reason behind the pain experience for breast cancer survivors. Questionnaires especially need to be checked for reliability and validity for specific populations- in this case for breast cancer survivors.


Thankfully, experienced rehab therapists have developed hands on methods to assess an treat pain associated with scar and adhesion changes. Clinicians across the world have informally been exchanging their ideas on the impact of surface and deep breast cancer related scars over the last 10 years. Over the last 3 years, leading oncology clinicians have come together online to present their practices to others via video presentations at the Breast Cancer Rehabilitation & Wellness Summits. (See links below)



A new tool for assessing scar & adhesion severity for breast cancer survivors


New research from Belgium brings a simple assessment tool to clinicians and survivors: a method of assessing the severity of scar and adhesions after breast cancer surgery. I will expand on the details of the tool because I believe it is a very important part of providing a comprehensive pain assessment to people after mastectomy


Firstly, An De Groef and her research team looked to identify where the assessment was required- which part of the chest. They engaged in extensive consultation with expert oncology rehab therapists in Belgium. Together they agreed that it was important to test an individual’s changes not just the scar at the skin ( layer 1) , but the changes at the superficial layer ( layer 2) and the deep layers of muscle and bone ( layer 3).


Next the research team decided that because of the complexity of breast surgery, seven locations in the chest area needed to be tested:

  1. mastectomy scar line

  2. node scar line

  3. mid chest

  4. side of trunk

  5. sternum

  6. armpit and

  7. breast crease.

Then there was the decision about how to rate the severity of changes at each of the 21 locations (7 sites and 3 layers). Clinicians are offered 4 levels of response to stretch, ranging from no difference in stretch to tissue that is not able to be stretched and completely adhered.


The final component of the assessment was for the clinician to test the tissue stretch at each of the 21 sites while the arm is in a stretched position. This feature addresses the location of mastectomy and how the inner scars can hide under the skin and fat especially when the arm is relaxed by the body and secondly if there is tightness it will become easier to feel and see when at maximum stretch.


Imagine having a clinician assess your mastectomy scars in this comprehensive way and then developing a scar release treatment program and exercises to suit. For people with no problems in scar and adhesions - then the exercise program may just focus on achieving the 150 mins /week as now recommended for cancer survivors.


For people with more severe changes then the focus is on reducing the scar and adhesion burden over time. Treating the muscles that are compensating during this time becomes an extra task as well as trying to get in the 150 mins of exercise per week. This is a lot of work- but you should see positive outcomes.


Imagine if some of your pain can be managed in this rehab process. This approach may also help the doctor and the individual to more clearly identify pain medication needs.


The Belgium researchers are hoping that this assessment tool may go on to be used to measure the effectiveness of treatments by changes in the before and after scores on the tool. We will need to wait and see about the tools effectiveness here.


In the meanwhilst , I use Arm to Ear test and Reach out the Back test for testing treatment effectiveness - I will tell more about these tests in future blogs.


Prof An and her team have made this assessment readily available and free for clinicians to use -across the world. Download the tool and supporting paper to share with your oncology healthcare team.


Link for full paper MAP-BC tool development

Download MAP- BC assessment tool.

View the interview with Prof An about the MAP- BC

Go here to click on the interview with Elisabeth Josenhans on treatment of mastectomy scar and cording

Go here to click on the Interview with Marjorie Brook and demnstration on the treatment of iron bra .

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