Making sure people get the support they need after a second breast cancer diagnosis

The study, published in the European Journal of Surgical Oncology, was led by an international multidisciplinary group of experts consisting of breast surgeons, radiation oncologists and patient advocates from across the UK, US and Europe.

Their findings highlighted that people experiencing a breast cancer recurrence need far better information and more time to make difficult treatment decisions. And survey responses revealed the complex and deeply personal factors that come to light in these cases.

When someone is diagnosed with breast cancer, surgery is often the first treatment. Breast-conserving surgery removes the cancer and a margin of healthy tissue, while keeping as much of the breast as possible. Then, you’ll usually have radiotherapy on the remaining breast tissue on that side.

For most people, this is where their treatment ends. But a very small proportion may later experience a breast cancer recurrence in the same breast. This is where the breast cancer comes back in the chest, breast or in the skin near the original site or scars.

When this happens, current guidelines recommend a mastectomy. However, growing evidence suggests that for some people, a second breast-conserving surgery may offer similar cancer control.

Ultimately, treatment decisions should be guided by which option is most likely to lead to the best clinical outcome. But patient perspectives are still very important. In this study, the researchers collected people’s expectations, preferences and priorities around a potential second breast-conserving treatment.

The researchers set out to understand how people view treatment options after a second breast cancer event.

They asked 105 people with a lived experience of breast cancer to imagine a low-risk second breast cancer event occurring 10 years after their initial treatment. Participants completed a survey with 33 questions exploring:

• Understanding of outcomes after mastectomy and second breast-conserving treatment
• How people view the risks, side effects, and recovery involved in treatment
• The importance of body image, cosmetic outcomes, and quality of life
• How information, time, and financial concerns influence decision-making

Survey responses revealed the most important factors around treatment for people experiencing a breast cancer recurrence.

Many participants reported feeling uncertain or underinformed about the safety and effectiveness of second breast-conserving treatment. Up to 42.9% answered ‘don’t know’ as to whether the 2 treatments were equally effective. And only 17.1% of participants felt that the long-term outcomes of second breast-conserving treatment were safe and well established, compared to 51.5% of participants for mastectomy.

Questions investigating concerns around body image and cosmetic outcomes also revealed important considerations. Nearly two-thirds believed second breast-conserving treatment would provide a more acceptable body self-image. And over half felt it would lead to better cosmetic outcomes than mastectomy with reconstruction.

65.7% of participants also reported that they believed further exposure to radiation through repeat radiotherapy carries risks. However, 75.7% did not see this further exposure as an unbearable burden.

Finally, the need for high-quality health information resources was made clear, with 99% of respondents reporting that having enough information about treatment options was important or very important. 96.2% also said that having enough time to consider options was important or very important.

Dealing with a recurrence of breast cancer in the same breast can be incredibly difficult, both emotionally and practically.

And many people can feel that they lack the information needed to make confident, evidence-based decisions at this difficult time.

Concerns around body image, quality of life and personal priorities can be just as important as cancer outcomes for people living with breast cancer. And clear, balanced explanations of all suitable treatment options are essential.

People need time, support and shared decision-making to choose the treatment that feels like the best option for them.

By contributing to this important study, our Breast Cancer Voices have helped to reinforce the importance of including patient voices when shaping future care and guidelines.