Choosing to live flat


It is now six months since I underwent my bilateral mastectomy without reconstruction for breast cancer. As soon as I was told that the lump in my right breast was cancer, I knew that I wanted a double mastectomy only. Cut it off and even me up while you are at it please!

Even though not all members of my breast care team understood my desire to be flat, my surgeon was very supportive. She did spend time showing me reconstruction photos (of a lady who had chosen to have a bilateral mastectomy with reconstruction due to a faulty gene), encouraging me to hold silicone implants of different sizes and explaining how safe and durable they now are since the PIP scandal. When my surgeon was trying to ‘sell’ me reconstruction to my right breast this included options to increase and/or lift my left breast at the same time. She continued to ask me if I had changed my mind each of the four occasions that I saw her in the run up to my surgery, but in the end respected my decision not to have – what I considered to be – unnecessary surgical procedures.

The National Mastectomy and Breast Reconstruction Audit states that “the primary aim of breast cancer treatment is to reduce the risk of premature death by removing or ablating the tumour”. In England four in ten women diagnosed with breast cancer undergo mastectomy, and in England and Wales around 21 per cent of women undergo immediate reconstruction (hscic.gov.uk, 2011) which suggests that reconstruction is also seen as an important aim of breast cancer surgery even though it has no bearing on the treatment of cancer.

Interestingly the same audit found that women who underwent reconstruction reported higher levels of emotional well-being than those who underwent mastectomy alone. This could be linked to their findings that only half of mastectomy-only patients were very satisfied with their surgical options compared to two-thirds of women who underwent immediate reconstruction and three quarters who had delayed reconstruction. The audit recommended that clinicians “should ensure that women are supported in making an informed decision about whether or not to have breast reconstruction surgery”. However it admits that there is a shortage of decision-making opportunities made available to women who undergo mastectomy.

I wonder if this is due to the wording of the The National Institute for Health and Care Excellence (NICE) guidelines: ‘Discuss immediate breast reconstruction with all advised to have a mastectomy and offer it. All appropriate breast reconstruction options should be offered and discussed with patients’. It seems strange to me that NICE, which provides national guidance and advice to improve health and social care, does not include the discussion of mastectomy-only options in its quality standards for clinicians.

I found an article from the Daily Express (26 May 2014) which reported on a study in which 8% of nearly 1,500 women with breast cancer studied had bilateral mastectomy and 18% considered it. However 70% ‘did not meet the criteria for losing both breasts’! Study leader Dr Sarah Hawley was reported as saying that losing both breasts “does not make sense” and that “One would argue it’s probably not appropriate to get the unaffected breast removed”.

Surely if the aim of breast reconstruction is to restore the shape and appearance of both breasts, regardless of whether both are affected, the surgical option to restore symmetry is entirely appropriate and should be extended to women who want to have mastectomy-only surgical treatment without having to meet certain criteria.
I wonder if it is the coverage of ‘Angelina’ surgeries or maybe the sexualisation of breast cancer that creates the illusion that everyone having a mastectomy is looking for a ‘boob job’ to boot? Bilateral mastectomies have doubled over the last decade according to the BMJ; 50% of women have had immediate reconstruction but this figure includes women without breast cancer of whom 90% have reconstruction.

At the time of Angelina Jolie’s mastectomy with reconstruction the media was awash with headlines such as “But as Angelina proves, having a mastectomy needn’t ruin your figure” (Emma Parlons, Daily Mail, 04 June 2013). This article goes even further with quotes such as: “your breasts are so integral to your sexuality”, “pleasingly more pert than my old breasts” and “the work of scientists meant I could cut my risk of breast cancer, as well as keeping my femininity and figure”. A consultant plastic and reconstructive surgeon, is also included in this article stating that, “women who had breast cancer were facing severely mutilating surgery”.

Where do I start?!

– when I was diagnosed with cancer my figure was the last thing on my mind.
– my breasts, including their pertness, were not integral to my sexuality nor my       femininity.
– my surgery was traumatic, but not mutilating!
I am not saying that mastectomy-only surgery is the right option for everyone, but it was definitely the best choice for me and I strongly believe that clinicians need to move away from this apparent focus on reconstruction and accept that many breast cancer patients may see bilateral mastectomy-only surgery as their preferred cosmetic option.

Personally, I prefer being bilaterally flat when I look at my figure; I like knowing that I have reduced my risk of having a local recurrence as much as I could; I am able to check myself in the knowledge that I can feel all of the minuscule amount of breast tissue remaining; I will not need annual mammograms; I never need to go bra shopping again (!); I can sleep more comfortably on my front; I can exercise without discomfort, and the surgical element of my breast cancer treatment was done quickly and I recovered in the shortest time possible for me.

The only negative for me is that my option to breastfeed was lost.

You may choose to reconstruct using your own tissue or a silicone implant; have a lumpectomy to save as much breast as possible; have a single mastectomy without reconstruction and/or request a prophylactic bilateral mastectomy like me.

The most important thing is that your wishes are considered and respected by your breast care/plastics team. Choosing which surgery is best for you is not limited to which option provides the best prognosis or fits society’s view of what femininity should look like; it is also about your quality of life and your emotional well-being going forward.

Resources to support you when making surgical breast cancer decisions:

www.flatfriends.org.uk 

  
A website offering advice and support from ladies who have had single or double mastectomy without reconstruction. You can also find them on Facebook and Twitter @FlatFriends_UK

www.abcdiagnosis.co.uk 

  
A website which provides information on all aspects of breast cancer treatments including reconstruction. Follow on Twitter @abcdiagnosis

www.breastfree.org.uk A website offering information, advice and support for women who are considering, or who have decided to not to have reconstruction