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How we're trying to better understand the experiences of women living with breast or trunk lymphoedema

Breast Cancer Now Voices is helping researchers at the Sheffield Hallam University understand how women experience and live with breast or trunk lymphoedema after breast cancer treatment

Breast Cancer Now Voices is helping researchers at the Sheffield Hallam University understand how women experience and live with breast or trunk lymphoedema after breast cancer treatment.

Made up of people whose lives have been changed by breast cancer, Breast Cancer Voices use their diverse experiences of breast cancer to shape and improve our work and change the future of breast cancer. These Voices help us accelerate research and provide vital support, every way we can.

The impact of lymphoedema

Some people develop lymphoedema after treatment for breast cancer. Lymphoedema is swelling caused by a build-up of fluid in the body’s tissues. It often affects the arm, but can also affect the breast, chest, shoulder or the area on the back behind the armpit.

Lymphoedema is a long-term condition, which means that it can be controlled but is unlikely to go away completely. And while we know more about lymphoedema in the arm, there’s less research and knowledge specifically about lymphoedema affecting breast and trunk (torso).

Janet Ulman, a PhD researcher at Sheffield Hallam University, wanted to understand more about women’s experiences of developing and living with breast or trunk lymphoedema. Breast Cancer Now voices were also given an opportunity to take part in this research.

Overall, 14 women took part in individual interviews, with some using photographs or drawings to help talk about their experiences.

An unseen ailment

Many women said that they couldn’t remember being told about breast or trunk lymphoedema as a possible side effect of their treatment.

It was viewed as “an unseen thing… an unseen ailment” that was “totally ignored”. Women found there was little or no information on the condition for patients. They also felt that once their treatment was finished, there was no one they could discuss their symptoms with.

Jackie commented on this, saying: ‘It's worse after because you've got nobody to talk to and say this or that. [You feel] very much on your own even though everybody's there going how are you? So you say yes, I'm fine, and carry on regardless of whatever’s happening under my tee-shirt.’

While some women were able to get a correct diagnosis straight away, others experienced delays in getting an accurate diagnosis and access to lymphoedema services. Many had their concerns ignored or even dismissed by healthcare professionals, who lacked knowledge or understanding about breast and trunk lymphoedema. This led many women to become worried or anxious that their breast cancer was coming back.

But once they accessed the lymphoedema service, women tended to speak very highly about the skills of the staff, who provided treatment and advice on how to manage the condition.

Losing your identity

Some women felt that having breast or trunk lymphoedema was life-changing, and in some cases felt like it impacted them more than breast cancer itself.

For some, managing an unexpected and life-long condition felt like the final straw after dealing with being diagnosed with breast cancer and receiving treatment for it.

Sharon, who took part in the study said: ‘I think you lose your identity a bit. Not just with the breast cancer but because - once you’ve had that - you think you’ve been through your treatment and then suddenly something else comes along.’

Many of the participants said that retailers didn’t understand the needs of women with breast or trunk lymphoedema. They had a specific need for garments that are both attractive and provide suitable compression and support.

Plus, the requirement to do daily self-massage to manage the swelling acted as a continual reminder of breast cancer.

Nevertheless, all the participants spoke about ways in which they had adapted, adjusting to ‘just being you but differently’.

Supporting women with lymphoedema

Using the information gained from the study, Janet proposed ways to improve how women are supported and diagnosed with lymphoedema:

  1. Creating resources for women that provide information about the signs and symptoms of breast and trunk lymphoedema
  2. Improving healthcare professionals’ awareness and understanding of breast and trunk lymphoedema, and its emotional and physical impact, so it can be better diagnosed and treated earlier
  3. Creating materials that can help support women by providing advice on how to self-manage breast or trunk lymphoedema

Studies like this show how important it is that we listen to the voices of people living with conditions such as breast cancer or lymphoedema, and we’re proud to have assisted with this research.


If you have an experience you would like to share, you could help others who may feel alone. Find out about opportunities to use your voice by joining our Breast Cancer Voices community. Researchers need you for your voice and experience, so be sure to check out opportunities to participate.

Breast Cancer Voices

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