The Lived Experience of Persistent Pain After Breast Cancer

Veronica Hackethal, MD

December 24, 2019

As breast cancer survival rates improve, more and more people are living with the long-term repercussions of cancer treatment. One common ― though underappreciated and understudied ― outcome is persistent pain.

A new study, published online on November 24 in the European Journal of Cancer Care, synthesizes information from four previous qualitative studies on this subject and identifies six themes that provide clinicians with insights into what their patients undergo.

The themes are as follows: feeling that the pain was unexpected and lack of support for pain; the impact of persistent pain on physical and daily functioning; coping strategies; experiencing a wide range of emotions, especially stoicism; and difficulty describing pain, at least initially. At first, participants described their pain as "prickly," feeling like "being run over by a steam roller," and feeling like being "torn and ripped into pieces." Over time, many came to label their experience as pain, report the authors, led by Julie Armoogum, MSc, RGN, University of the West of England, Bristol, United Kingdom.

Up to 30% of women who live with breast cancer experience persistent pain, say the authors.

Liz Ball, MD, who was not involved with the study, can relate to the findings.

A former breast surgeon in the United Kingdom who was diagnosed with stage III breast cancer at age 40, Ball, who is widely known on social media and elsewhere by her married name, O'Riordan, added that pain is often overlooked or downplayed.

"I didn't want to bother anyone with the pain. You feel it's something you should live with, but it was so hard to deal with," she told Medscape Medical News via email.

When her cancer was diagnosed in 2015, she underwent a nipple-sparing mastectomy with breast implant and reconstruction, sentinel node biopsy, axillary node clearance, and chest wall radiotherapy.

Afterward, she suffered postmastectomy pain syndrome, with burning, nerve pain, and spasms that felt like electric shocks so severe they made her swear out loud. She also developed severe cording — scar tissue that can feel as if a tight cord is running from the armpit down the inner arm, sometimes all the way to the palm of the hand.

"It felt like a painful tightness with movement, like stretching your hamstrings after a run," she said.

Despite physical therapy, the cording persisted and left her with a frozen shoulder. More surgery restored some but not all of the movement in her shoulder.

In 2018, O'Riordan experienced a recurrence of her cancer, necessitating removal of the breast implant and more radiotherapy. By then, her pain had become chronic, and she had permanently lost full range of motion in her shoulder.

That led to a difficult decision: to retire from her profession as a surgeon.

Yet, even today, O'Riordan continues to help others affected by cancer. She now volunteers as an ambassador for Working With Cancer, a nonprofit organization in the United Kingdom dedicated to helping people with cancer return to work. She is also a TEDx speaker and author of The Complete Guide to Breast Cancer.

But her pain persists. To treat it, she has tried nortriptyline and gabapentin. She stopped taking them when the side effects made her feel so hungover that she couldn't concentrate. Eventually, she tried botox injections and experienced some improvement. Today, she lives with neuropathic pain on a daily basis and still experiences pain from the cording.

Cancer and Pain: Hand in Hand

The four studies included in the new article were published in English between 2007 and 2019. Three were conducted in Scandinavia, and one was conducted place in France. They include the experience of 52 breast cancer survivors who range in age from 26 to 83 years. Study participants described their experiences with persistent pain in interviews that lasted from 30 minutes to 4 hours.

One narrative that emerged in all four studies had to do with persistent pain going hand in hand with cancer, in both positive and negative ways. Pain led some women to question whether their cancer had returned. For some, it served as a reminder of their life-threatening cancer diagnosis; for others, pain was reassuring — an indication that treatment had worked.

Women also described lack of acknowledgment or support for managing their pain, reminiscent of O'Riordan's experience.

"As a surgeon, I didn't get how much of an issue pain could be. I waited a long time before raising it because I didn't think there was anything that could be done to help," O'Riordan said.

For some women, these experiences brought up feelings of abandonment, as if they had been left alone to deal with their pain. At least one woman was referred to a psychiatrist to treat her pain.

"[I] felt disappointed in life, like I was abandoned and totally alone. Not abandoned by my fellow man but abandoned by life....," said one woman.

Like O'Riordan, women described how pain interfered with their ability to perform in the workplace. Pain also interfered with physical activities and social activities. Some women could no longer perform household chores, such as cleaning, ironing, or washing windows. Others could no longer drive long distances. They coped by altering their daily activities, such as taking breaks or doing chores in different ways to lessen their pain.

Some women gained comfort by comparing themselves to people whom they considered less fortunate, such as someone in a wheelchair. Yet such coping strategies, when employed by survivors themselves or their healthcare providers, may have led some to dismiss their pain.

"There is a doctor who told me, 'You know, if you feel pain, madam, take a short tour of A&E [accident and emergency], and you'll see, you will immediately get better.' He said, 'Go and see a few kids at A&E. You'll stop complaining all the time.' I was so shocked that I never returned to that hospital," said one woman.

These results highlight the importance of knowledge about persistent pain after cancer ― both to inform patients about their risks and to help them manage pain if it develops, according to author Armoogum and colleagues.

"Healthcare professionals supporting cancer survivors with persistent pain need to be aware of the impact the experience of cancer may have on the intensity and emotional distress surrounding the experience of persistent pain," they write.

From a surgeon's perspective, O'Riordan admitted that when she discussed the risk for persistent pain with patients, little detail was offered. Not everyone develops it, and it's hard to predict when it will occur, she said.

It's hard to have women consider permanent pain that may reduce their quality of life, said O'Riordan, "when they are already dealing with a cancer diagnosis and loss of a breast, body image, and sexuality."

But she also emphasized the importance of educating healthcare professionals and patients about persistent pain after cancer, as well as making available typical and atypical pain treatment methods for patients coping with persistent pain.

"At the first post-op follow-up, surgeons, nurses, or oncologists could let women know that it can occur and what to do when they get it," she said.

"It comes back to educating healthcare professionals that pain can be crippling and educating patients that pain can be a sadly normal side effect of treatment."

The authors and O'Riordan have disclosed no relevant financial relationships.

Eur J Cancer Care. Published online November 24, 2019. Abstract

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