A new project to raise awareness of the impact of cancer on women’s fertility, and to better equip women to make decisions around protecting their fertility when diagnosed with cancer, is being led by academics at Leeds Beckett University.
The Cancer, Fertility and Me study has been funded by Yorkshire Cancer Research and is led by Georgina Jones, Professor of Health Psychology at Leeds Beckett, alongside colleagues Jane Hughes and Dr Neda Mahmoodi.
The aim of the project is to create, implement and evaluate what will be the first decision aid booklet to help women diagnosed with any cancer (where treatment is of curative intent and may affect their fertility) make important choices about protecting their fertility when they receive their diagnosis.
Professor Georgina Jones explained: “One of the biggest impacts of cancer treatment in women is infertility and it is difficult for women with cancer to make decisions on longer-term lifestyle planning around starting a family while simultaneously addressing the immediate concerns of cancer therapy. However, a recent UK survey by Breast Cancer Care found that as little as 12% of 170 women were referred to a fertility consultant, with many being unaware that infertility was a consequence following chemotherapy.
“We have developed a decision aid resource to be made available in oncology and haematology, so that it can be offered to women before they see a fertility expert. Previously, such a resource was only available to breast cancer patients and was provided by fertility services, often too late. The new resource will be the first available for women diagnosed with any type of cancer and will be provided early on in their diagnosis to help them to make the right decision for them, at the right time.”
The resource has been created and pilot tested and now, in the next stage of the study, it is being trialled in two regional cancer and fertility centres in Yorkshire – St James’s University Hospital in Leeds and Weston Park Hospital in Sheffield – over the next two years. The research team now want to recruit patients – newly-diagnosed women with cancer across Yorkshire – to take part in the research.
The Cancer, Fertility and Me project aims to build on evidence which shows that cancer doctors need resources which enable them to support women’s fertility preservation decisions more effectively. Women also currently report that they do not feel well-supported in their choices and need more specialist information to help them make these decisions.
Professor Jones said: “For example, a 16-year-old girl could be diagnosed with leukaemia or lymphoma by a haematologist and have to decide very quickly whether or not she wants to take steps to protect her fertility. To do this, she would also need to be referred to see a fertility specialist and many are not referred to begin with. If they are, women often report struggling to make the decision in such a short time.”
Chemotherapy, radiotherapy, hormonal, medical and surgical treatments may all affect female fertility. Cancer survivors often report loss of fertility as one of the most distressing outcomes of their cancer treatment.
Women have three main options:
- They can choose not to do anything – not all treatment will affect fertility long-term; however, this cannot be predicted.
- Women can choose to freeze their eggs or to freeze embryos with a partner.
- Ovarian suppression – women can take a hormone drug, with or without freezing eggs or embryos, to temporarily prevent the ovaries from producing oestrogen, minimising the destruction of eggs during chemotherapy.
There are also some options specific to particular types of cancer: for example, women diagnosed with cervical cancer can undergo a trachelectomy (partial hysterectomy to remove the uterine cervix) or can receive ovarian transposition or shielding, where their ovaries are either moved out of the way or covered in an attempt to protect them from the radiotherapy. A new method of tissue freezing is also available in some areas of the country, which is particularly relevant for those under-16. This method is not yet available in Yorkshire but the research has highlighted an unmet need for girls/women affected by cancer and the team are exploring how Yorkshire women can access this option.
Professor Jones said: “Our aim is for patients to feel better supported and more informed at the time of planning their cancer treatment and before referral to the fertility expert. It should enable women to make better informed and personalised choices, have more focused consultations with the fertility experts, and have a better opportunity to ask the right questions at the right time during the fertility consultation.”
The researchers will collect feedback from women and hospital staff using the decision aid to find out how it makes the decision-making process easier and how hospitals and clinicians like using it.
Professor Jones added: “The important thing for us is to get patients and clinical teams on board with the decision aid and to refer women at the right time. Too many women are having the decision made for them and then feeling devastated in the future when they want to have a child. This should be a priority when women receive their cancer diagnosis.”
Dr Kathryn Scott, Interim Chief Executive at Yorkshire Cancer Research, said: “We are very proud to be funding this essential research to support people living with and beyond cancer. Going through a cancer diagnosis is an incredibly tough time, and we need to ensure that patients are better supported so that they can make informed decisions about their treatment and long-term quality of life. This is particularly important for women who may wish to have children in the future. We hope that the resource, funded thanks to donations from people living in Yorkshire, will help women make the best decision for them.”
The team developing the aid also includes clinical specialists based at Sheffield Teaching NHS Hospitals Foundation Trust, Sheffield Children’s Hospital NHS Foundation Trust, Leeds Teaching Hospitals, Sheffield Hallam University, the University of Leeds, Oxford University and Breast Cancer Care UK.
The final version of the Cancer, Fertility and Me decision aid will be made available to all female cancer patients free of charge.
Notes to Editors
For further details please contact Carrie Braithwaite in the Communications team at Leeds Beckett on 0113 812 3022 or email firstname.lastname@example.org
Notes for editors:
- Leeds Beckett University has more than 29,000 students on programmes in Leeds and abroad and just over 3,200 staff.
- The Vice Chancellor of Leeds Beckett University is Professor Peter Slee.
- Leeds Beckett was one of the first universities to hold the Customer Service Excellence standard across the whole institution.
- 97% of Leeds Beckett University’s UK students were in work or further study six months after graduating. Source: Destinations of Leavers from Higher Education 2014/15.
- Leeds Beckett was ranked first in the world for technology, with 94.6% satisfaction, and second in the world for virtual learning, with 95.6% satisfaction in the independent Student Barometer survey.
- Harrogate-based Yorkshire Cancer Research was founded in 1925 and is the largest independent regional cancer charity in England (Registered Charity 516898). We are not part of a national charity.
- We are committed to reducing the devastating impact of cancer on the lives of people living in Yorkshire.
- Our mission is to work in partnership, fund research and support initiatives that will help people in Yorkshire avoid, survive and cope with cancer.
- Current statistics show that 575 people are diagnosed with cancer in Yorkshire every week. Incidence and mortality rates are higher than the England average due to social deprivation, post-industrialisation and lifestyle choices but also availability of healthcare services and difficulties accessing early diagnostics, clinical trials and the latest treatments.
- We aim to:
- Be the leading authority on cancer in Yorkshire, understanding the problems and priorities in the region and sharing knowledge with partners.
- Raise awareness of cancer and how to prevent it by working in local communities, schools and colleges, sports clubs and with other health-related organisations.
- Promote screening programmes and fund research that can improve the diagnosis of cancer so we can detect and treat it at the earliest opportunity.
- Invest in innovative research projects at every stage of a cancer patient's journey.
- Campaign for fair and equal access to the very best healthcare services and a greater share of the money spent nationally on research.
- For further information, please visit www.yorkshirecancerresearch.org.uk or follow us on Facebook or Twitter