Breast Cancer Now Voices is helping researchers at University College London Hospitals to understand how receiving permanent tattoos to mark the area for radiotherapy treatment affect women.
Breast Cancer Now Voices is helping researchers at University College London Hospitals to understand how receiving permanent tattoos to mark the area for radiotherapy treatment affect women.
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.
Why tattoos for radiotherapy?
Some women undergoing breast cancer treatment will receive radiotherapy treatment. It is usually given to destroy any cancer cells that may have been left in the breast and surrounding area after surgery. Radiotherapy is given using a specialist machine, that delivers high-energy x-rays to destroy the cancer cells.
To ensure these x-rays are delivered precisely to the right area over several appointments, the therapeutic radiographers apply three to six small, tattooed skin marks to help align the treatment. They are called radiotherapy tattoos.
The impact of radiotherapy tattoos
Sairanne Wickers, Consultant Breast Radiographer at UCL Hospitals, wanted to explore how women felt about the permanent tattoos they had received for radiotherapy. We know that some women have their radiotherapy tattoos removed after finishing their treatment. However, tattoo removal is not routinely available on the NHS and the results can vary.
Understanding the perspective of women who have received radiotherapy could help to improve the treatment. It led Sairanne to design a questionnaire to explore how women felt about the tattoos they had received for radiotherapy.
Breast Cancer Voices helped distribute the questionnaire to women of a wide range of ages, ethnicities and times since diagnosis. This provided some valuable insights, highlighting that the impact of these tattoos on wellbeing may be greater than previously thought.
‘They remind me of what I went through’
Over 200 women filled in the questionnaire asking them ten questions about radiotherapy tattoos, making it the largest survey on this topic in this patient group ever conducted. 95% of participants could still see the tattoo on their breast bone.
Sairanne found that over half (59%) of participants said that their radiotherapy tattoos have never bothered them, with some even feeling proud and positive about them.
For a small fraction of people, it was a positive reminder that they have had breast cancer, with one woman saying: ‘I feel they help me remember that thanks to my wonderful NHS nurses and doctors my cancer is in remission’ and another mentioning that that ‘they are war wounds I wear with pride. They remind me of my strength and resilience.’
‘Cancer is hard enough without a permanent reminder’
However, over a quarter (27%) felt that their tattoos served as a constant reminder of their breast cancer. One woman described that ‘it felt like the final straw, as I didn’t want a permanent reminder of my cancer treatment’ with some women stating that they hated them.
14% of respondents also said that their tattoos affected what they wear: ‘It is a constant reminder of my breast cancer. One tattoo is in my upper cleavage area so on display if I wear a lower neckline. The tattoo looks like a giant blackhead. I wear different clothing now because it is on display.’
Most importantly, the vast majority (93%) of the respondents agreed or strongly agreed that if there was an alternative to the permanent tattoos that was just as accurate for treatment but would fade and become invisible over time, they would opt for this alternative.
Testing a semi-permanent alternative
Now, Sairanne is planning the Non-Permanent Alignment Tattoos for Breast Cancer Radiotherapy (NEAT) trial in London, which investigates a semi-permanent alternative to radiotherapy tattoos.
Sairanne and her team want to understand how well the semi-permanent tattoos work for radiotherapy treatment and how long it takes before they become invisible to the patients after treatment. They also want to know how patients with these semi-permanent tattoos feel about them, compared to patients that have the permanent tattoos.
If successful, this semi-permanent ink could help solve some of the major issues highlighted by women. This important research wouldn’t have been possible without the diverse experiences of Breast Cancer Voices and we look forward to the results of this trial.
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.