Guest blog: Flat Friends UK
What is Living Flat?
Flat Friends use the term ‘flat’ to describe ourselves whether we:
- are living with one breast
- are living with no breasts
- wear prostheses
- don’t wear prostheses
- don’t want reconstruction
- can’t have reconstruction
- are waiting for reconstruction
- had failed reconstruction
- haven’t decided yet
- want Contralateral Prophylactic Mastectomy (CPM) – the removal of an unaffected breast
- don’t want CP
Flat is the space where a breast was. It does not automatically describe our whole chest or how we decide to dress. According to the Royal College of Surgeons’ last National Mastectomy and Breast Reconstruction Audit in 2011, around two thirds of women who have had a mastectomy are Living Flat. Yet, up until 2014 there was no dedicated support for UK women living flat – but one woman changed that!
How Flat Friends UK came about
Gilly Cant was 45 years old when she was diagnosed with Invasive Ductal Carcinoma in her right breast, with node involvement. She had a single mastectomy, chemotherapy, and targeted drugs; and joined an international Facebook group for women Living Flat. However, Gilly soon realised that UK women would benefit from their own dedicated support group where they could discuss things such as healthcare and clothing, as well as being able to arrange local get togethers.
Flat Friends’ private Facebook group now has 1800 members where women who have had mastectomy surgery can find and offer emotional support and practical advice, and those facing mastectomy can gather information before making their decision.
When Gilly was diagnosed she knew that none of the reconstruction options were for her, so she opted for a single mastectomy without reconstruction. But as she had large breasts, she found that her remaining breast was affecting her quality of life. Gilly’s breast surgeon agreed to remove her breast (known as ‘Contralateral Prophylactic Mastectomy’ or ‘CPM’). It was only after creating the Flat Friends Facebook support group in August 2014 that Gilly realised she was considered ‘lucky’ for having a surgeon who would agree to perform a CPM on a healthy breast. Many women who are having a single mastectomy and wish to achieve symmetry without reconstruction are made to see a psychologist before their request will be considered. Many more have their request for flat balancing surgery automatically refused.
This spurred Gilly on to register Flat Friends UK as a charity in 2016, with the aim of supporting more women, and promoting flat as a positive outcome and an equal option alongside reconstruction. Flat Friends UK wants all women to be supported and provided with practical information whichever surgical pathway they are considering. This is why we support women who are living flat while they wait for delayed reconstruction, as well as those who are undecided.
Patient booklet for living without reconstruction
Our patient booklet ‘Living without Reconstruction’ was launched in 2018 and was written entirely by Flat Friends members. It includes the information and advice that they wish had been available when they had their mastectomies. It is available as a free hard copy via breast care teams, and as a free digital download for all on our website. Since we had our first stand at the Association of Breast Surgery we have been providing our literature to over 150 breast cancer units and hospitals.
Still work to be done
According to a recent survey conducted by us, only a third of women facing mastectomy were informed of the option to live flat. It seems that in spite of The National Institute for Health and Care Excellence (NICE) guidelines, there is still a lot of work to be done to ensure that all women facing mastectomy are able to make an informed decision, and that no woman faces discrimination based on societal ideas of what a woman should look like.
When the NICE guidelines regarding breast cancer surgery were revised in 2018 Flat Friends UK successfully advocated for Flat to be recognised as a surgical option which should be discussed with all women facing mastectomy surgery. NICE recommends that professionals and practitioners:
1.5.1. Offer both breast reconstruction options to women (immediate reconstruction and delayed reconstruction), whether or not they are available locally.
1.5.2. Be aware that some women may prefer not to have breast reconstruction surgery.
The NICE committee agreed that ‘the option of no reconstruction should also be discussed, because this may be the preferred option for some women’ (NICE, 2018).
Shockingly, only half of the women we surveyed said that they felt well informed of the facts about options to reconstruct or stay flat, prior to their mastectomy surgery. This must change. Flat Friends UK’s next step towards achieving mastectomy equality will be the publishing of our research on informed decision making, patient voice, and patient choice, later this year.
If you would like to know more about us please check out our website www.flatfriends.org.uk and follow us on Twitter, Facebook, and Instagram. If you are a woman in or from the UK, living flat or facing that decision, and you wish to join our private Facebook support group then please contact us via our public Facebook page ‘Flat Friends UK – Registered Charity 1168730’
Please note that I, Sara Liyanage posting this as Ticking Off Breast Cancer, do not accept responsibility for the content of the guest blogs. The information and content provided in all guest blogs is intended for information and educational purposes only and is not intended to substitute for professional medical advice. Please seek professional advice or speak to your medical team if you have any questions about the issues raised in this guest blog.