Patients, carers, healthcare professionals and researchers have come together to highlight the most pressing unanswered questions in breast cancer surgery. These questions will become the basis for new research to move forward breast cancer care and to benefit current and future patients.
Patients, carers, healthcare professionals and researchers have come together to highlight the most pressing unanswered questions in breast cancer surgery. These questions will become the basis for new research to move forward breast cancer care and to benefit current and future patients.
Patients’ voices in research
Breast Cancer Now supported a Priority Setting Partnership led by the Association of Breast Surgery and the James Lind Alliance to define the most urgent unanswered questions in breast cancer surgery.
A Priority Setting Partnership is a way to give people affected by breast cancer and at high risk of developing the disease a louder voice in research. Through this partnership, people with breast cancer, their carers, family members and healthcare professionals defined the top 10 questions about breast cancer surgery that they most want answers to.
These questions will be shared with the research community and research funders in the UK to guide new research projects.
The Top 10
These are the top 10 questions that urgently need research to answer them:
- Can complete lymph node removal be avoided in patients with spread of breast cancer to the armpit; what are the alternatives and the outcomes of this approach?
- What factors increase the risk of breast cancer returning; is it possible to predict which patients are at higher risk to help them make a more informed decision about breast cancer surgery?
- Are minimally invasive, image-guided techniques (e.g. vacuum excision or freezing) to remove or destroy the breast cancer a safe and effective alternative to breast cancer surgery?
- In patients having breast chemotherapy before surgery, what is the best way of monitoring the cancer and is it possible to tell whether the cancer has completely responded to treatment without performing an operation? How long, if at all, after finishing chemotherapy should an operation be performed?
- What is the best management of ductal carcinoma in situ (DCIS, an early form of breast cancer) and how is this influenced by tumour and patient characteristics (e.g. patient age, hormone receptor status)?
- Are there some low-risk breast cancers or lesions detected by breast screening that do not need treatment at all, and how is it possible to work out which ones these are?
- How does a breast cancer diagnosis impact on patients’ wellbeing? What information and support do patients want around the time of diagnosis, during and after treatment, and what are the best methods to individualise this?
- What are the outcomes of mastectomy with and without breast reconstruction; how should these be discussed with patients so that they have realistic expectations of outcomes and can make informed decisions?
- What is the best method of follow-up imaging to detect whether the cancer has returned following breast cancer surgery and how is this influenced by tumour and patient characteristics (e.g. patient age, hormone receptor status)?
- What is the impact of mastectomy with or without breast reconstruction on quality of life for women at high risk of breast cancer, and when or at what age should surgery be performed?
The process for defining priorities
These questions are the result of a thorough process of enquiry and prioritisation that Breast Cancer Voices had a chance to take part in.
The Priority Setting Partnership first ran a survey that asked patients, families and healthcare professionals to submit their questions about breast cancer surgery. Around 260 people took part, sending in 940 questions in total.
These questions were then reviewed for duplication. They were also categorised and checked to ensure they had not already been answered through existing research. The result was a list of 59 summary questions that need to be researched further.
The next stage of the process was a second survey, asking people to choose the questions that they think are the most important to answer. It was completed by 572 individuals. The most highly ranked questions from this survey were taken to a final workshop with 22 patients, carers and clinicians discussing and ranking the questions to determine the top 10.
Shaping future research
These research priorities were presented at the recent Association of Breast Surgery Conference in Liverpool and will soon be published in a research paper so that they can inform new research projects.
Breast Cancer Now will be asking researchers applying for its funding to take into account how their research is progressing our understanding in these 10 priority areas.
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.