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Trustee, Ingunn Holen, posing for portraits.

Helping researchers understand people’s experience of bisphosphonates

Our Breast Cancer Voices have helped a team of researchers better understand how people feel about taking bisphosphonates for primary breast cancer. Our Voices use their diverse breast cancer experiences to create change and impact breast cancer work and research.

Reducing recurrence

Bisphosphonates are a type of drug that slows down or prevents bone damage. For people with primary breast cancer, bisphosphonates can reduce the risk of breast cancer spreading to the bones and other parts of the body.

In 2018, bisphosphonates became the UK standard of care for some women with primary breast cancer who’d gone through the menopause. As a result, Professor Ingunn Holen and her team at the University of Sheffield wanted to better patients' experience following this change in practice.

Asking the questions

To explore this, the researchers developed a survey with the following aims:

  • To provide real-world data on patients’ experience taking bisphosphonates
  • To explore patients’ general understanding of why they receive bisphosphonates
  • To understand any difficulties or side effects of this treatment

They distributed their 30-question survey through Breast Cancer Voices, and 25 voices took part in the study.

The researchers found that 5% of participants didn’t complete the full course of treatment. The most common side effects were joint pain and fatigue, followed by flu-like symptoms and muscle pain. But 30% of the survey participants reported no side effects at all.

All participants understood that bisphosphonates prevented breast cancer from spreading to the bone, but only 55% mentioned that they helped prevent breast cancer from coming back. And only 41% mentioned that received enough information about the use of bisphosphonates after their surgery.

Providing better information

This research highlights that while people were motivated to complete their therapy, they didn’t always know why they were taking it. These findings will feed into work, to make sure that people taking bisphosphonates are fully informed of its purpose.




Breast Cancer Voices supported our project from what was only an idea until the end and the dissemination of our results. They put all the efforts to make our project as successful as possible. I learned so much throughout this process and the advice I received from the team.

Become a Breast Cancer Voice

Anyone who has been affected by breast cancer can become a Breast Cancer Voice and impact research. Find out opportunities to use your voice by joining our community.

Breast Cancer Voices

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