So, January 20th 2015 I had a bilateral mastectomy. I pushed to have both breasts removed and my wonderful surgeon eventually agreed. I didn’t want reconstruction, and I didn’t want to feel lopsided. I also didn’t want to risk a repeat of the dreaded breast cancer in my remaining breast – my lump was hard to detect until it was huge! It was very scary though; I knew I wanted both off but it was a massive leap into the unknown, and I couldn’t find anyone else who had followed this path.
Amazingly, the day after my mastectomy I stumbled across Flat Friends on Facebook. Other women like me, I had definitely found my sisterhood. These women ‘got it’, they shared, they supported, they inspired, they laughed (and cried) with me. I’ve never looked back. And the best bit? I never have to wear a bra again. I am flat and most definitely fabulous!
Flat Friends has also since grown into an amazing charity, passionate about women having information and access to all the options available to them following their diagnosis of breast cancer. I am so grateful to them for all they do.
As I stand in front of the mirror on an Autumn morning, sun streaming through the windows, hands on hips I look at the woman staring back at me. My hair is slowing growing back, thicker and darker than before, eyelashes and eyebrows getting there. Chest rising and falling gently with each breath, mindful, hopeful, and two gradually fading scars where my breasts used to be. It’s a very different silhouette to the one that I used to have but it’s one that I feel very grateful for.
Living flat is not for everyone and it was not a straightforward place for me to get to, although when I think about that now it makes me feel aggrieved that it wasn’t. Breast cancer treatment is hard enough.
I was diagnosed with breast cancer in September 2020. My cancer was stage 3 and Her2 positive so I had chemotherapy first, then surgery and radiotherapy and I am just coming to the end of my active treatment with Herceptin and Pertuzamab. It was discovered via genetic testing that I have a Chek2 Mutation, which carries an increased risk of developing multiple breast cancers over a lifetime.
When I got the point of having surgery discussions with my team, after lots of research I had already decided I wanted to live flat. I went to that appointment with a list of questions about aesthetics, recovery and physiotherapy. I don’t think that is what my surgeon was expecting. He talked to me about various reconstruction options, describing them in detail and explaining the various body parts of me that might help with that. He was obviously proud of his reputation as a skilled Onco-Plastic Surgeon and I’d seen photographs of his work so I could see he had made a difference to lots of women, all of whom had given very positive feedback. But it all sounded terrifying to me. Months of recovery, potential for additional surgeries and risks of my body rejecting his handiwork.
What’s the recovery like without reconstruction I asked?
“Well, it’s much shorter and we can leave some skin behind so you can change your mind at a later date.”
That was the moment I realised that this was not going to be straightforward.
I left that appointment more determined than ever to live flat. I started searching for positive stories and images to take back to my next appointment, that was when I came across Flat Friends UK and their resources. I wrote a letter to my Surgeon explaining why this was how I wanted to live and sent it to him ahead of my next appointment. I was met with the news that I would have to have a psychiatric assessment before my surgery could be agreed. This was apparently a discussion to make sure I understood what I was consenting to, and the implication of it on things like my body image and relationships. I already had a very supportive husband and friends. The prospect of it made me feel really uncomfortable, how could someone who had never met me decide from a telephone call whether I should be allowed to make a decision like this? And if it was a supportive thing why was that not necessary for me if I chose a reconstruction option?
Luckily the lady I spoke to was very supportive, we ended up having a really animated discussion about what ‘choice’ really meant in this situation. She wished me a speedy recovery and I put the phone down with a feeling of renewed determination and an ever longer list of questions for the Surgeon.
By my next appointment I had finished chemotherapy and my double mastectomy was finally agreed.
My surgery took place on 2nd March at the height of yet another lockdown. As my surgeon drew on me he asked again whether I was sure? I have never been more sure of anything in my life and I told him so. I asked him to promise to make me beautifully flat with 2 separate, gently curved scars. I said goodbye to my breasts in a hospital bathroom mirror which didn’t feel as sad as I thought it would, but weirdly empowering.
When I came round afterwards, fuzzy from anaesthetic and pain relief I slowly lifted the sheet to see my chest and the relief washed over me. Free of cancer and hopefully reducing my genetic risk of another breast cancer some day in the future. I haven’t really looked back from that moment.
I was lucky, I have had a straightforward recovery, have healed well and regained most of my mobility after my lymph node clearance. Radiotherapy didn’t cause any issues and my scars are fading now with everything feeling much more comfortable as it settles down. And I’m happy. Happy and hopeful that I’ve done everything I can to live well beyond cancer for a good few years to come. There hasn’t been a moment of regret as yet, if anything it’s stoked a fire in me to use my voice and my scars to help other women advocate for themselves. It’s not for everyone, but it should be equally represented in the decision-making process and surgeons should be as proud of their flat closures as they are of their reconstructions.
I got out of the shower in the spring of 2016 and turned the other way to reach the towel, and in the mirror I noticed a dent on the side of my right breast. I did not really think anything of it until I read an article. I made an appointment to see my doctor, and popped along. She examined my breast; she felt, she looked, she stood back, and looked again and said “I don’t want you to worry but I need to send you to the breast clinic. My appointment was days later to see the surgeon; he felt and looked and said I needed to have a mammogram, scan and a biopsy. I could not have it that day as the mammogram machine broke down and when I finally got my appointment for the day I was meant to pick my sister up from the airport. I thought about putting the scan off, but I was told under no circumstance was I doing that. It is awful waiting for these things. I have never had a mammogram before and blimey you are man handled, I never knew your boob could go into so many shapes! They took 4 pictures of both breasts, then a scan and a biopsy (a small cut was made in my breast, and they took out 3 samples of tissue). After fainting on the bloke, I was put on a trolley until I felt better then I was free to go home and wait for the results.
All sorts of things start running through your mind. You start looking up information on breast cancer, trying to find out if you have it. I kept busy working, I had a only just started my new job not even been there 3 months. Finally, I got my appointment for my results. Everyone wanted to come with me but I went on my own as in my head there was nothing wrong with me. Let’s face it I did not have any lumps or bumps and I was not losing weight – things I associated with cancer.
When I walked into my appointment I knew I had breast cancer; the Macmillan nurse was sitting in the corner. I tried to be so strong as he told me I had grade 2 cancer and because where it was I was going to have to have a mastectomy. I had a melt down and cried. The Macmillan nurse took me to another room and gave me a folder containing all the information I need to deal with this
I was given a date for my operation and had 2 weeks to take all this in. I got in my car and cried my heart out not for me but the people that love me, how are they going to take this. My sister is here on holiday and now I am going to ruin her time with this. I called my partner and told him, he was in a worse state then me all he could say was ‘NO, NO, NO, why you’. I told him that I needed a mastectomy and again all he could say was ‘NO, NOT YOUR BOOB’. All I could think was, get over it.
I was diagnosed BRCA2 positive 12 years ago, aged 30. I knew a prophylactic mastectomy was probably on the cards for me but didn’t feel ready to take that step yet so made the decision to have surveillance in the form of annual MRIs.
At the end of November last year, something suspicious showed up on my routine breast MRI but the targeted mammogram and ultrasounds that I had a couple of weeks later didn’t show anything to be concerned about. In fact, the consultant sent me on my merry way and the breast care nurse told me how pleased she was for me that it wasn’t anything to worry about. Surprisingly, a week later I received a letter in the post advising that I’d been booked an appointment to have an MRI-guided biopsy due to my BRCA status. Another week later I was back in hospital for my results: I had DCIS (ductal carcinoma in situ) of the left breast. This is non-invasive breast cancer but, in the words of my doctor, it’s important to remove it before it does become invasive. She went through the mastectomy and lumpectomy options in detail but when pressed admitted that in my position she would choose a double mastectomy, as with BRCA2 this would all likely happen again at some point and I’d have to go through all the same tests, worry and stress.
It was actually talking to my brother in the car on the way to my biopsy that I started to consider the idea of having a mastectomy without reconstruction. Once I had my diagnosis I began searching the Internet and social media for pictures of women who had chosen living flat, and the idea began to solidify in my mind. Luckily for me, I only had one (what I would term) ignorant comment, from a registrar. When I mentioned I wouldn’t be having reconstruction she frowned at me and said that I was too young (41) and would change my mind.
I have no regrets about choosing to remain flat. I was not interested in having foreign items inserted into my body (implants) /multiple surgeries and wound sites (autologous or “flap” reconstruction) / lengthy operations, and was keen to have as little time under general anaesthetic as necessary and as quick a recovery as possible. Added to this, I knew there was a risk of numbness of the chest and did not like the idea of having two numb mounds permanently attached to my chest.
I continued my research and was lucky enough to find the Flat Friends UK Facebook group. I’ve never experienced a support group like it: so many people who actively welcome, support, and lift each other up, along with giving advice when asked and sharing personal stories. Feeling like this group of women, who I’d never met, had my back absolutely helped smooth my journey to becoming flat as well as recovering emotionally in the weeks and months after my operation.
I’ve also found there are a lot of us “flatties” on Instagram and, while I knew I could never be a blogger, I decided to start an Insta account documenting me coming to terms with my new shape and this has really helped me get my head around things, apart from which I’ve made connections with some fantastic women around the world who have also chosen to share their experience of living without breasts.
When FFUK said there was going to be a topless photo shoot I got that feeling of nervous excitement in the pit of my stomach and knew it was something I wanted to be involved in. The actual day was incredible: over 30 women who want to spread the word that living flat is a healthy, normal and totally acceptable choice. I’m so proud to have been able to be part of this group of amazing women and really hope that we play a role in normalising mastectomies without reconstruction.
I was diagnosed with high grade DCIS (ductal carcinoma in situ) in March 2019 which came as a result of my first mammogram after turning 50. I had had my mammogram on my daughter’s birthday in January 2019, and when I got a call back about 10 days later to say they couldn’t read the mammogram and needed to do another one I didn’t think anything of it as I knew this had happened to friends.
We were away on holiday towards the end of January when they wanted to do it, so I said ‘tell me when you have a slot and I’ll book in’. I should maybe have been a bit concerned when the lady said ‘no, you tell me when your available and we will slot you in’. So, a few days later I went back to the hospital and had my scan done again.
Just 2 days later I had a letter asking me to attend again for some biopsies. I think it was then I started to worry. Again, a few days later I went for my biopsy and when it was time for my appointment they took me into the counselling room. Alarm bells rang and the nurse said to me ‘We have found some specks in your mammogram. we just need to check them but it’s likely they are of no concern and everything will be fine’. I didn’t quite believe her, and she gave me leaflets on DCIS and breast cancer. I went home to wait a week for the results. The longest week of my life.
The following week I saw my consultant. He walked into the examination room, with 2 nurses with him, one holding a pink folder and I knew what he was about to say. He sat in front of me, held my hand and said ‘there is no easy way to tell you this, but you have breast cancer. It’s DCIS which is classed as pre-cancerous; but it’s high grade and we need to treat it as soon as possible.’
There was a range of emotions: happy it wasn’t full blown cancer but angry it was me, why me? I’d already had a brain haemorrhage three years previously which had nearly killed me. Sadness, because I had to tell my children there was something else wrong with mom.
My consultant gave me a list of options and loads of paperwork to read and said he would see me in a week’s time to discuss my chosen option.
I went back a week later having made my mind up to have a lumpectomy; little did I know I would have no choice to make. When I saw my consultant he told me they had relooked at my mammogram and the DCIS was widespread throughout the breast, and as the main bulk of it was near my armpit he would have to do a mastectomy and remove the first 4 or 5 lymph nodes. I trusted him and so I just had to deal with it. The positive was I could have reconstruction at the same time with an implant.
So, on 9th April 2019 I had a mastectomy and reconstruction. From the moment I woke up I hated the implant, it was heavy, it didn’t feel part of me, and I was in pain. I spent the next 4 weeks back and forth to the hospital in constant pain. The drains were in nearly 4 weeks and eventually had to be removed even though I still had lots of fluid coming out. I was also told I would still have to have radiotherapy as they couldn’t get clear margins at the top of my chest wall.
By mid May I was feeling so poorly I went to the emergency ward at our local hospital with a red rash right across the breast and it weeping fluid, with the scar opening up. They rang my consultant – who was away on a conference but would be back that evening – and he said he would come and see me. In the meantime, I was put on 2 different intravenous antibiotics.
About 11pm that evening straight from the train station my consultant came to see me and said he’d never seen anything like it. The wound had opened up and was leaking a horrible thick fluid. He said he would be back to operate and take out the implant at 7am the next morning. I could hear him talking to another surgeon who was on duty and all I heard were the words ‘necrotising fasciitis’ – a rare but serious bacterial infection. I knew it was serious by then, but I trusted him 100%.
Next morning I went for surgery and when I woke up he came to see me to tell me I had a serious infection and he’d removed the implant and scraped out all the infection, but he’d also had to remove a lot of the skin from my chest. I would need a skin graft which he would do as soon as he could.
Six weeks later I was back in the hospital having the graft taken from my leg and put onto the chest wall. He’d already warned me that grafts sometimes fail and you have to have them repeated. Luckily mine took and today it looks good, acceptable given the circumstances, and I can now look at myself again. In August 2019 I started my radiotherapy: 4 months late but still needed.
In December 2020 I told my consultant that I wanted the other breast removed for symmetry as it would be very difficult to attempt any kind of reconstruction on the left side and I wanted to look symmetrical. Fortunately, he agreed straight away and I had my second mastectomy on in March 2021. I love my body now. I very, very rarely wear my prosthesis and looking forward to being able to wear those tops I never could being a big-busted lady previously.
My team were nothing but supportive and caring throughout my journey. I was sometimes a difficult journey, although certainly not as difficult as some of our ladies in Flat Friends. But I couldn’t have wished for a better team to look after me.
So here I am, mask on sitting in a porta-cabin in the hospital car park waiting to have my boobs squished. I’m quite blasé about the whole thing and just want to get on with planning for Christmas, well as much as you can plan when the latest Covid announcement seems to suggest that Christmas may well be cancelled….really?? To me Christmas is more than a stuffed turkey, presents and parties but then I’m an old fashioned girl that remembers being excited about a Brazil nut, hazelnut, walnut and tangerine at the bottom of my Christmas stocking, Christmas is definitely going to happen in our house no matter what anyone says.
I’m called through to the torture chamber that houses the wonderful mammogram machine. It doesn’t seem that long since I had my last one so I know what to expect. Eighteen months ago, in June 2019 I presented myself at the doctors with a lump on the side of my left breast. I had been aware of it for a few months and it was starting to ache. The nurse had a feel, agreed that there was a lump and said it would be best to get it checked out. I was referred to the Breast Clinic for further examination. I attended my appointment at the Breast Clinic a couple of weeks later. After another mammogram and a bit of prodding and poking I was told it was nothing to worry about, just calcification which is not unusual in a woman of my age…I was only 55, what was he suggesting? Apparently, the breast tissues changes once you hit the menopause and calcifications are not unusual. I was sent on my merry way with an explanatory leaflet and told to keep an eye out for any changes and to attend my regular mammograms. So here I am, 18 months on doing what I was told!
The nurse is as gentle as she can be operating this boob-crushing machine, but when she puts the clamp on my left breast I feel a stabbing pain, it didn’t hurt like this before. She notices my sharp intake of breath and asks if everything is OK. I explain that this breast has a lump but that everything is OK, its only calcifications. She nods and says she’ll pop a note on the record so that they can look at this when they analyse the screen shots. I have a nagging feeling in my head that something isn’t quite right but push it to one side. I have to get on with planning for this cancelled Christmas.
A week after my mammogram a letter marked with an NHS logo lands on the doorstep. I gingerly open it hoping for good news but silently expecting bad. I have been invited to attend a Breast Clinic on 16th December as they have spotted some abnormalities on the images. I tell my husband it’s nothing to worry about, its only calcifications and everything will be OK. At this point I’m not sure who I’m trying to convince the most, him or me. He offers to take me to the Breast Clinic appointment (nearly one hour drive away), but I explain it’s a waste of his time and I’ll be fine. He’ll only have to sit in the car in the car park and I could be ages. Reluctantly he agrees to let me drive myself.
I arrive at the Breast Clinic and am seated in a small waiting area, there is only me in there. I forget that with this ongoing Pandemic and the Covid regulations everything is so very different. No smiling faces, no waiting room banter. Just silent single appointments, masked faces and anonymous eyes. I am called through to a room containing the familiar boob squishing machine. The radiographer skilfully manoeuvres my breast into position, today they are only concentrating on my left boob, this is the problem child. Before I know it I’m back in the silent waiting room alone with my thoughts. It will be alright won’t it? I’m called back again to the same room, this time the radiographer explains they want some more detailed images using smaller plates and different angles. I dutifully bend into the contorted positions requested and zap, further pictures are taken. Back to the waiting room I go, yet more time to overthink things. After about 10 minutes a nurse appears and explains that they would like to take more detailed images using an Ultrasound machine. This made me smile, it brought back memories of that Ultrasound 27 years ago confirming that I was indeed pregnant with my son. I somehow didn’t think that today’s results were going to bring the same elation and I certainly wouldn’t be going home with a picture to show proudly to my friends.
I lie on the couch and the nurse introduces me to the Radiographer, a man with nice smiling eyes. He explains that he is going to put cold gel on my breast and use the Ultrasound machine to take more detailed images. He glides the probe across my breast and I try to view the image on screen from the corner of my right eye. I have no idea what I’m looking for but I feel the need to look for something. He focuses the probe on one area, gliding backwards and forwards and I see the same blurry image appear and disappear on the screen. He looks at me and says they now need to do a biopsy. I have heard the word biopsy used before and I know what it is, but I had absolutely no idea how they would do it, or what it would feel like. There is a calm flurry of activity and bits of equipment are gathered. The nurse explains that they will give me a local anaesthetic to numb the pain and before I know it a needle is in me and the cool liquid starts to work its magic.
I liken the noise of the biopsy machine to that of a staple gun, I hear the words ‘sharp’ then bang, the machine is activated and it takes a core of tissue from the problem area of my boob. There is a second bang in the same area and I’m informed that they’re fitting me with small titanium markers so that they can find the spot if they need to do surgery. Surgery? I hadn’t got my head to that place, I wasn’t anticipating any of this, it’s just a lump, just calcification, nothing to worry about…..isn’ it?? I lie there thinking that I wish Marc my husband had brought me to the appointment, I want to cry but I know I need to be brave and hold it together. Three biopsies are taken, one from near my armpit, one from the left side of my boob and one from near my nipple (that one really hurt). The radiographer’s eyes are not smiling in the same way now, they take on a pitying look, the look you give someone when you know that something is wrong and you feel for them. The nurse asks me if I have a family, now my mind really is working overtime!
I make myself decent and ask the nurse and radiographer when I will get the results. They explain that the biopsy results will be discussed at the next MDT meeting (Multi-disciplinary- team) on Friday and then they will be in touch. The nurse pipes up that it is Christmas Day on Friday so it will be the week after….oh no, that is New Year’s Day so it will be after then. Basically, I can expect to hear something early in the New Year. I am shown to a quiet room, they bring me a cup of tea and I’m left alone with my thoughts and told I can leave when I feel ready. I want to cry, I want my husband, I want a big hug, I don’t want what this may bring. Whatever it may be just is not welcome.
I take a deep breath, put on my big girl brave face and walk out to the reception area. There is nobody around. I take off my face mask, pop it in the bin and go to open the door to leave. A lady appears from the office behind the reception screen and hands me a letter and wishes me a Merry Christmas.
I sit in the car and run my fingers along the sealed letter edge. Do I open it now? Do I wait till I get home? What does it say? Is it good news, bad news? Only one way to find out. I open the letter and read it through a couple of times. It is inviting me to attend a meeting with a Consultant from the Breast Surgery team on 29th December and I can take someone with me to the meeting. Breast Surgery…why, what have they found? What happened to the MDT meeting to discuss the results, this suggests they already know the answer, I can take someone with me in these crazy Covid times of solitary everything, it must be bad news. This was one of the longest drives home I’ve ever done, I just want to be back in familiar safe surroundings and to have a big hug from Marc and for him to tell me everything will be alright. On the way home I promise myself that whatever the results may be and whatever needs to be done, I will stay positive and will not let this beat me or define me.
After trying to enjoy the Christmas that was cancelled but not cancelled, me and Marc are sat in the waiting room at our hospital’s Breast Unit. We are lucky enough to have a dedicated Breast Unit positioned away from the main hustle and bustle of an Acute city hospital. I can’t help but admire the calming Aubergine coloured walls and coordinating chairs and sit listening to Smooth Radio playing tunes. Marc and I hold hands and sit in silence, each of us supressing our own inner fears, my name is called, he gives my hand a small squeeze and we follow the nurse to a consulting room. Four little plastic chairs are strategically positioned and we take our seats. The consultant introduces herself and introduces the Breast Care Nurse. She explains that she has the results from my recent tests and that it is not good news. I have a 70mm x 60mm area of disease which has been confirmed as invasive ductal carcinoma which is HER2+, multiple lesions around my nipple and evidence of disease in at least 3 lymph nodes. I am surprisingly calm whilst she explains this and look across to Marc who has tears in his eyes. I lean over to kiss him on the cheek and reassure him that everything will be alright, it will be alright, I can control this, and it is not going to beat us and spoil the life we have planned.
The consultant goes on to explain that because of the size and extent of disease I will need to undergo a programme of Chemotherapy followed by surgery and then radiotherapy. All of these words are familiar but never in my wildest dreams did I believe they would ever be used in a sentence describing something that would happen to me, it all feels a bit like an out of body experience. I seem to recall smiling pathetically under my mask and thanking the Consultant for explaining things to me. Everyone seemed surprised at how well I was taking the news, to be honest, I surprised myself. The Consultant explained that because of the size of disease a mastectomy would need to be performed, this meant my whole boob needs to go, blimey I really wasn’t expecting this. She said that because I would need radiotherapy immediate reconstruction could not be carried out and that a delayed reconstruction would need to be performed. Gosh, that meant I would be without a boob, how would that look? Would Marc still love me, would I still look like a woman? So many thoughts racing through my head, so much information to take in. I am told that I have been referred to the Oncologists for my chemotherapy plan and that I’ll be seen again by the Consultant just before the end of my chemotherapy to discuss the surgical phase. I feel like I’m an actor in a play and everything is just happening around me. I’m partly numb, partly scared but overwhelmingly I’m wanting to grab what little bit of control I can from this situation.
I’m not very good at not being in control. In my working life I liked responsibility, I liked making decisions, I liked having control of situations, solving problems and making things happen. This is what I do best. I have now been thrust into a new world using a vocabulary I don’t understand and being invited to attend appointments to have things done to me which I can’t influence. CT scans, blood tests, MRI scans, Chemotherapy. Drugs pumping through my veins making me feel rubbish all in the hope that it will target and kill this unwelcome visitor in my body. I am told I will most likely lose my hair. I can take a bit of control here, let’s have my hair cut short so that it’s not such a shock. Boom, I have a short haircut and actually quite like it…should have done this sooner!
After my 6th and last Chemo session I get an invite to a meeting with the Breast Consultant. I start to think about surgery and the word Mastectomy keeps playing around in my head. I start to do some online research about implants and breast reconstruction and am not really sure this is the route I want to take. Having experienced the impact of Chemotherapy I am not so worried what I look like or what people think of my appearance. I am still me no matter what I look like and whether I have boobs or not. I’ve got through the past 18 weeks with withering nails and no hair so body image confidence has had to improve by default. Do I really want to go through a second round of surgery after radiotherapy just to create a new boob? I’m not sure I do, my boobs have done their job and it’s not as if I have a successful fashion modelling career to protect. My dilemma now is do I want to live life with just one boob or would I prefer to have no boobs? I discuss my thoughts with Marc and he says he will support whatever I want to do and says he loves me whether I have one boob, two boobs or no boobs, it makes no difference to him, it’s my body and he encourages me to do what I want.
I look online and type a few key words into the Facebook search. This is when I discover the Flat Friends Facebook site. What a revelation this is, a group of ladies talking a language I am starting to understand. All so supportive of each other and happy to give advice to other ladies whatever stage they are at on the Breast Cancer journey and all have decided to live either partially or totally flat. I scroll through the pages, reading about people’s stories and the more I read the more it helps me to crystallise my thinking. I want to be flat and I want to be totally flat. I read one lady’s post explaining that she too had reached this decision and that she had to work really hard to convince her surgeon to perform the operation to remove her second breast. She had to use words like symmetry and mental wellbeing – definitely not fear of recurrence as this would not be considered a valid reason. Why not? Surely if you have gone through what we have gone through you will always live in fear.
I take note of the hints and tips and deposit these in my memory bank to retrieve at the meeting with my Consultant. This new information shared by generous ladies on the Flat Friends site provides me with new tools to pop in my armoury and the confidence to make an informed request.
I meet with the Consultant and a Breast Care nurse, they are both very pleasant. I was expecting an examination of my breasts and a discussion about what the surgery would entail but no, there was none of that. I was just asked if I understood that I would be having a mastectomy with full lymph node clearance and I told I had been booked in for 24th June 2020 and would most likely be in just for the day. The consent form was handed to me and I was told to take it with me, read it, sign it and then hand it in on the day of my surgery. Did I have any questions? Eh yes actually I do, please will you consider removing my other breast? The Consultant did a double take, pushed back on his wheeled chair and said, ’No, no, no, no, nooooo! There is no more chance of you getting cancer in your other breast than anyone else getting it.’. I told him that I understood this and that this was not the reason for my request – this is where my Flat Friends tools come into play.
I explained that I wasn’t small chested and that being lopsided could have an impact on my posture in the long term and also I would find it more psychologically damaging to look at just one breast, it would be a constant reminder. I explained that I didn’t want reconstruction I wanted to stay flat. This was met with surprise and the comment ‘Why on earth wouldn’t you want reconstruction?’ It appeared to me that reconstruction was expected and routinely offered and that ‘going flat’ was not something to be promoted or even encouraged. Why not I wondered? I explained again that I would prefer to be totally flat than to have just one breast and that I did not want reconstruction to my mastectomy side. I wanted to be able to choose my body shape, with one large boob I would feel lopsided or I would feel I would have to wear a prosthesis. If I were flat I could choose whether to be flat or whether to wear a bra and falsies, I could take control. I think the Consultant realised I was serious and the Breast Care nurse was great, she could tell this mattered to me a great deal and said that she would support my decision. She reminded the Consultant that she was there in her professional nursing capacity but also as an advocate for me and my voice, hallelujah!
I was told I would need to undergo a psychological assessment over the telephone from a Clinical Psychologist and this would be arranged ASAP. My friends thought this was hysterical and one even said I needed to start role play immediately as trying to prove I wasn’t barking mad was going to take a lot of effort – how rude!
Joking apart, I personally found the assessment a very valuable part of the process. It wasn’t a short conversation, it probably took around one hour. We discussed how I was diagnosed, what this felt like, how I’d handled my treatment, how my family and friends had reacted, what sort of support network I had, my relationship with my husband, my relationship with my body, my fears, my anxieties, my fears for the future, why I wanted to be flat, why I had reached this decision, did I think I would regret it in the future, do I have any concerns about being flat, what are they? This session really made me think and really helped me reinforce in my own mind that this truly was what I wanted. The telephone call concluded with the Psychologist giving me positive feedback and saying she would be endorsing my request in a letter to my Consultant and GP. Another hurdle out of the way, just surgery to go.
The Flat Friends Facebook pages have become my crutch. I dip in at every opportunity with a mild obsession about where other people are with their cancer journey and how they are coping. I read about things that make me sad, things that make me happy, things I can totally relate to and some things I can’t. I get comfort in being able to offer words of support and encouragement to other ladies and have jumped in lots of pockets (a term we use to each other to show we are there in spirit). I haven’t met any of these ladies but feel I know them, we are like a large family that pull together and understand each other. No question is a stupid question and whatever you are experiencing, you can bet someone else has been there too and can offer some pearls of wisdom, if not, there are always tens of people happy to jump in your pocket and give you support in hours of need.
My surgery date is looming so I take particular notice of posts on the ‘Surgery’ pages and am comforted by positive stories and tales of speedy recoveries. It appears the majority of people are out the same day with manageable pain and very few complications, just what I needed to read, everything will be just fine.
I arrive at the hospital at 7:30am and I am first on the list for surgery, that’s a big plus. In the next hour I’m visited by a string of professionals all doing something different, observations, surgical stocking fitting (very attractive), hospital gown issue, anaesthetist explaining the putting me to sleep process, the surgeon to put a big arrow on my lymph node removal side and to double check I really do still want both boobs removing with no reconstruction later and finally a nice theatre assistant walks me down to theatre for what he describes as ‘the best sleep ever’. I get on the couch, an anaesthetist with kind eyes talks to me whilst putting a cannula in my hand and a mask on my face……I don’t remember anything else.
I am woken by a voice calling my name repeatedly, I have no idea where I am I just know that I am having a good sleep and don’t want to be woken. Reluctantly I open my eyes and realise it’s all done, I’m in the hospital and the operation is over. I look under my hospital gown, I’m now flat. An emotion I can’t describe washes over me, part relief, part sadness, part realisation of what has happened but most of all a recognition that this is the beginning for a new me. The cancer has been cut away, the lymph nodes on the offending side have all gone and I am now flat, totally flat. Yes, I have radiotherapy to go but the worst is over, this is the start of a new beginning for a new flat me and I am going to embrace it and live life to the full.
My cancer journey so far has taught me so many things about myself and about others. I have learnt that I have some amazing, selfless fantastic friends who have pulled out all the stops to be there for me, I will never forget this. I have learnt that the love I have for family is important and deep and that I shouldn’t be disappointed when my feelings don’t appear to be reciprocated….we’re not all the same and don’t all have the same values in life, I mustn’t judge. I look at nature with absolute wonder, I love to look at flowers and trees and to walk along quiet lanes taking in the birdsong and smelling the fresh air (or not so fresh at times), it reminds me I’m alive and I’m thankful for every day. I want to experience new things, I want to take myself out of my comfort zone, I want to meet new people and make new friends, I want to see new places, I want to be the best me that I can be. I’m proud of my scars, they remind me of the journey I’ve been on and show me that if I can get through this I can do anything if I put my mind to it and want it enough.
My first ‘out of my comfort zone’ experience will be the Flat Friends topless photo shoot, taking place as part of ‘Flat Fortnight’ to promote the fact that we can live full and happy lives without boobs. Me a topless model….who’d have ever thought it?.
I was diagnosed back in 2016, I only went because I’d had pain in my shoulder and a lump there on and off. I always remember the day. It just felt so surreal. Even my surgeon didn’t expect it. You just go through the emotions. Go through the journey. I remember my surgeon trying to explain to me what I had got, I had already been told by the ultrasound lady that I had cancer. I looked at my surgeon and said, “It’s ok I know. What’s next?” and, “Take them off!” But they didn’t want that.
Chemo was hard. The first one was awful as they couldn’t find a vein. I found it distressing to be in a room full of people watching, I was scared. In the end I had a port. The first three FEC chemo sessions I learned very quickly that I had a gap of two hours before I felt so unwell that I just needed to sleep. The next day I was ok. The T chemo part of the treatment I really struggled and had to ask for help as the stomach pain was bad. I chose to work through chemo as I had my melanistic barn owl called Echo at only 2-months old. He was and still is my rock.
It came to a choice of surgery; well again I asked for a bilateral mastectomy and they just wouldn’t go for it. The comment was “It’s the easy way out and it’s what everyone says. I was emotionally talked into having a lumpectomy, but I just couldn’t do it so went back again. I said I still wanted both breasts off but they said no again. I was emotionally drained, and they talked me into a single mastectomy on the left. So, I asked for the implant so I could be symmetrical. I remember waking up and looking down. I was prepared for a huge size difference as my other one was a 40dd, and they had prewarned me that they couldn’t match the size due to the sag!
Along came radiotherapy which should have been the easier part of the journey but I found it very distressing. Gradually I tried to get my life back to normal, which was very hard as I felt so tired. In a way you just go through the emotions. The next year I was diagnosed with lymphoedema and I now wear a compression sleeve which I really don’t like. I tried to pursue having surgery again to sort the healthy breast out but nothing seemed to go to plan. Sadly, on a up to date MRI scan a lump was found on my lung. That surgery was very scary, I felt like I couldn’t breathe as I was feeling so overwhelmed and exhausted. Luckily the lump was benign. This was on my left side, so everything got disturbed again.
Gradually I developed capsular contraction which made my implant literally sit under my chin! And with the size difference it was emotionally hard. Eventually I just felt I needed to give up so I got them to take out the fluid in the implant. I felt so annoyed. Ladies shouldn’t have to fight for the choice of going flat. I knew it’s what I wanted, and I couldn’t have been any clearer. I knew about having a psych assessment some women are made to have a second mastectomy but wasn’t aware I had to pay for it! After the psych assessment, I got the go ahead to go double flat. But we shouldn’t have to go through it. I knew I wouldn’t regret it.
I was so relieved once it was over. It was quite a journey to heal, and I was quite poorly. But to not wear a bra now is awesome. I had been with Flat Friends for a while. They are so supportive and kind. The special day was organised that like-minded souls got together as one to say it’s ok to be flat! You’re beautiful. I saw the advertisement and I was adamant I would do it. I walked in the room, my hand held by Jo Anne as my anxiety was so bad. The ladies were lovely, and I knew I could do this. I was proud of my decision the day I walked out of the hospital, so I knew I could do this. We were all connected and once we took our tops off no-one was scared; we were us! I was so proud of everyone. I will continue to be with Flat Friends. I’ve even offered to organise get togethers in my area. Thank you Flat Friends.