Mastectomy Options Survey

May 8, 2022
10:19 am

A survey conducted by Flat Friends found that patients facing mastectomy in the UK are being denied information and treatment options.

PRESS RELEASE 8 MARCH 2021

Breast cancer charity, Flat Friends, has written to the National Institute for Clinical Excellence and Matt Hancock MP asking for breast cancer patients to be better informed of their mastectomy options.
New survey finds 53 per cent of women don’t feel informed of all the surgery options available to them after their mastectomy.
Less than a third of women (32%) are given information about going fully flat i.e. having the cancer-free breast removed to achieve symmetry, with only 11 per cent offered it as an option.
NICE guidelines currently only give the option of reconstruction to achieve symmetry.
92% of women denied surgery to go fully flat are dissatisfied with how they look in the mirror compared to 6% who were allowed.

Breast cancer charity, Flat Friends, has today (8 March) written to Professor Gillian Leng CBE, the Chief Executive of the National Institute for Clinical Excellence (NICE)[1] calling for women to be given more information when undergoing a mastectomy and a revision of current guidelines to allow for more treatment options.

It comes after a survey[2] carried out by the charity found that less than a third of women (32%) were given information about ‘going fully flat’ i.e., having the cancer-free breast removed to achieve symmetry and 53 per cent of respondents did not feel well informed ahead of their mastectomy of all surgery options to either go fully flat or to have reconstruction.

Contralateral prophylactic mastectomy (CPM) sees the cancer-free breast removed at the same time or following the mastectomy of the cancerous breast. NICE guidelines currently only give the option of reconstruction to achieve symmetry, with respondents reporting being told that removal of the remaining breast does not reduce reoccurrence so isn’t deemed necessary.

However, many women seek to have a CPM for other reasons, with survey respondents saying their main considerations for having a CPM were a desire to achieve symmetry (83%), psychological distress of having one breast left (62%), concerns about health risks of having reconstruction survey (55%), postural balance being affected (48%) and minimising surgical recovery period (41%).

Despite the desire for CPMs, only 11 per cent of respondents were offered it at the same time as their single mastectomy.

Gilly Cant, Founder and Trustee of Flat Friends said:

“Not achieving symmetry has a big impact on how women feel about themselves and their bodies. Despite this, thousands of women are being denied symmetry unless they undergo reconstructive surgery – which they might not want.

“Every woman should have the right to choose. To do so, they need all the information – on both reconstruction and going fully flat – so that they can make informed choices about what works for them. Women who choose to go fully flat need to have access to that surgery.”

The survey highlighted clear differences in the quality of life experienced by women who had been allowed a CPM and those who were denied. 92 per cent of women denied a CPM felt dissatisfied with how they look in the mirror clothed compared to 6 per cent of women who achieved CPM.

Women denied a CPM were more likely to say they ‘Have not felt attractive at all’ (67%, compared to 11% who had received a CPM), ‘Have not felt like other women’ (58%, compared to 4% who had received a CPM), ‘Have not felt normal’ (58% compared to 5% who had achieved a CPM) and ‘Have not felt feminine’ (50% compared to 4% who had achieved a CPM).

100 per cent of respondents who had a CPM allowed said they had no regrets of their decision.

For the survey respondents who had been denied a CPM, the main reasons given to them were either funding constraints or it not being allowed under NICE guidelines. 29 per cent were given no reason at all. Under the NHS 2020/21 National Tariff Payment System a Unilateral delayed free perforator flap breast reconstruction is £7,303 whilst a Unilateral major breast procedure is £2,724.

38 per cent of respondents were asked to see a psychologist as part of their decision-making process. All of those were women who had requested a CPM. Women are not required to see a psychologist if they wish to undergo breast surgery.

Gilly Cant, Flat Friends continued:

“There is no cost saving to be made from denying women the option of a CPM. By doing so, women are instead absorbing the personal cost that comes with being unhappy with how they look.

“No woman is taking this decision lightly and so whilst offers of counselling and support are welcome, a psychological assessment of women requesting a CPM can be seen as insulting.”

Notes to Editor:

Contact: Catherine McCoy, Flat Friends: 07929 569293 or email: trustees@flatfriends.org.uk

About Flat Friends

Flat Friends was founded by Gilly Cant in 2014 following her decision not to have reconstruction surgery and discovering there was not a space where women like her could find support, advice and friendship.

A registered charity since 2016, Flat Friends now supports over 2,000 women via its private Facebook community, online form and face-to-face as well as the charity’s website.

[1] The letter was addressed to Professor Gillian Leng CBE, and copied to Health Secretary, Matt Hancock MP; Shadow Health Secretary, Jon Ashworth MP; Julie Doughty, President of the Association of Breast Surgery; and Tracey Irvine, Senior Clinical Advisor for Breast Surgery of Getting It Right First Time.

[2] The survey was carried out by Flat Friends. There were 207 responses from breast cancers patients across the UK, the majority of whom had received treatment and surgery within the past five years.