I was diagnosed with breast cancer in January 2016. This post describes my treatment, including two mastectomies, and how I decided not to have reconstruction after mastectomy but to live flat.
Cancerversaries come thick and fast for me at this time of year.
I haven’t written much publicly about my breast cancer, but I feel that now is the right time for me to get on my soap box and start shouting about it. I want women and men to be aware of all of the possible symptoms of breast cancer – not just the lumps – and, once diagnosed, to have all treatment options presented to them; especially if mastectomy is recommended.
Two years ago, in January 2016, I was diagnosed with Invasive Ductal Carcinoma in my left breast after a routine screening mammogram; my second at the age of 54. I had no symptoms and certainly hadn’t felt a lump, but two weeks later I heard those words that we all dread hearing…. “I’m sorry to say that you have cancer”. I had already guessed that it would be bad news. I could read the face of the doctor who’d taken the core biopsies from my breast, even though she had tried to stay neutral, telling me that nothing was certain, but, yes, the area did look suspicious.
I’ve never been so glad to have had my breasts squeezed flat between two huge x-ray plates, however painful it may have been. I believe that the timing of that mammogram saved my life or at least meant that the cancer hadn’t spread beyond my breast. As I said, I had no lumps and I did check myself pretty regularly, so I went to that mammogram with confidence that I definitely didn’t have cancer. Even when I was recalled for further investigations, I naively persisted with that thought. All that positivity stopped as soon as the doctor’s face gave away what she had seen.
So, no lumps but a new realisation that this meant nothing and that I could be diagnosed with breast cancer anyway. I was shocked – this was not in my life plan!! When I was being examined, the breast surgeon seemed to pay particular attention to an area at the bottom of my breast, showing it to the Breast Care Nurse who was there to support me. I saw in the mirror that there was dimpling in that spot and both of them exchanged glances to visually confirm between themselves that this was the symptom that I should have been aware of.
I was only vaguely aware that dimpling could be a sign of cancer, and I had no idea that I had an area of dimpling. Those of you who know me, also know that I have (or had) very large breasts. This suspicious area was right at the bottom of my breast and very well hidden.
I want you all to know and to be aware of breast dimpling as one of the possible signs of breast cancer. If you see it, please go to your GP and asked to be checked out. There are many other ways that breast cancer can make itself known, if only we are aware of what to look and feel for. Copping a feel of your breasts could lead you to an early diagnosis, mean that you avoid chemotherapy, surgery, and radiotherapy. Or, copping a feel of your breasts could mean that you have to go through all of those, but it could very definitely save your life!
I think that this is one of the best illustrations of what to look out for.
So….. I had a lumpectomy and sentinel node biopsy on February 11th 2016 – 2 years ago this week. I was relieved that it seemed to have been caught early enough for me to need only conservative surgery followed by radiotherapy. It was thought that the tumour was only 20mm. How little did they know!! My world really did come crashing down on 24th February 2016 when I was told that actually the tumour was multifocal (in lots of places throughout my breast) and was actually 70mm and Grade 3; I would have to have a total mastectomy.
This is where my second soap box subject comes in – having all the treatment options presented when mastectomy is recommended – and, for me, this is a really important one as it is not discussed very widely or openly. Being told that I needed a left mastectomy was one of the worst moments of my life, especially as the news was broken to me by a hassled doctor who was wearing the worst wig I’d ever seen, who couldn’t meet my eye, and who was obviously in a hurry to be somewhere else. But that’s another story!
I broke down and bawled my eyes out. I just couldn’t conceive of losing a breast. I’d heard of people having mastectomies but had never known or met anyone who’d had one and so had no idea what it entailed. It really did seem to be the worst outcome possible…. but then it was broken to me that I’d need chemotherapy as well. One breasted and bald – what else could go wrong?
Mastectomy always means reconstruction, right? Wrong actually. Why is it assumed that all women will want to have reconstruction? One reason could be that the medical professionals think that we all want to look exactly like we did before our surgeries, and that our breasts define us as women. While this may be true for many women, it was not what I wanted. Although it did take me a few days to reach this conclusion.
After being told that I was going to have my left breast cut off, I was shown some gruesome after and after photos. I think they were actually called before and after, but I like to think of them as after mastectomy – numb, flat chested with no nipples – and after reconstruction – numb, breast shaped chest with no nipples.
My extremely kind and caring Breast Care Nurse assumed that I would want to undergo breast reconstruction because that’s what everyone does, and I agreed that that is what I would do…… because I knew no different and was not given any information to let me know that there was another option – no reconstruction.
It turned out that the only reconstruction option open to me was the DIEP flap procedure, or tummy tuck as it was sold to me. I was so lucky as I would definitely go down a jeans size after the 8-hour operation which would leave me with a hip to hip scar and a “breast” fashioned out of my own fat from my stomach. Oh yes, and no nipple – that would have to be added later.
I would have to have delayed reconstruction because I was expected to have radiotherapy and they couldn’t do surgery until a year after my last session! So, I would be living as a uniboober for at least 18 months – this would be interesting for someone whose remaining breast was a GG cup. As it turns out, the enforced delay was a gift. More of that later – I was in shock and had accepted that I would undergo the reconstruction surgery and have the positive upside of being able to go and buy new jeans after the operation!
Fast forward to a few days later. Doubts had been growing in my mind about whether I really wanted to undergo such a long procedure and recovery. I kept pushing them away because everyone I spoke to thought it was the best thing for me to do and they all seemed to focus on the tummy tuck part. I also thought that reconstruction was the only option. Why wouldn’t I? I hadn’t been given any other choice.
I clearly remember having one of those light bulb moments after Googling (this was one time that Dr. Google came up trumps) “does anyone not have breast reconstruction after mastectomy”. I found the Flat Friends website, and public Facebook site, and I felt that I had found some kindred spirits. There were women out there who had chosen not to have reconstruction and were living happily as uniboobers or completely flat.
This was a total revelation to me and I knew immediately that this was the route I would go down. The more I Googled, the more I saw photos of flat and semi flat women. These photos were far less shocking to me than the after photos that I’d been showed in clinic. It was so wonderful to interact with women who felt the same as me and to know that I wasn’t a freak for wanting to live without a replacement breast. In fact, the thought that kept replaying in my brain was why not have both removed and live totally flat?
March 17th 2016 – the date of my left mastectomy. Not such a fun St. Patrick’s Day for me that year! My surgeon had rejected my idea of a bilateral mastectomy, so I woke up after the operation as a uniboober…….. and I hated it. I hated that I’d had my breast removed, and I hated that I was now so lopsided and would still have to wear a bra with a fake breast in the other cup. It’s amazing how one can adjust to anything though. Once my scar had healed, I got used to my large silicone breast and wore it every day. It was so funny to take my bra off with my breast attached to it at the end of the day – it certainly made a thud as it hit the floor!
Still, I couldn’t get the thought of a Contralateral Prophylactic Mastectomy (CPM) out of my mind, and I mentioned it to my surgeon at every check-up. He was clearly loth to remove a healthy breast but once I started to use the symmetry argument, he became more open to the idea.
At my annual check-up, sitting topless on the side of the examination couch with my GG cup remaining breast lying pendulously down my front, I asked him whether he thought it fair that I should have to go through the rest of my life so lopsided. I think at that point, he realised that I was serious and rational and probably wouldn’t shut up about it. He agreed that he would perform the CPM but that I had to go to talk to a psychologist first to make sure that I wasn’t mad. This seemed a small price to pay, but I did, and do, wonder why women who opt for reconstruction don’t have to see a shrink too?
November 9th 2017 – the date of my second mastectomy. What I haven’t mentioned is that I’m terrified of having operations, and I’d already been forced to have two. My decision to have an elective operation is one of the bravest things I’ve ever done. It turned out to be one of the best things that I’ve ever done! Having lost one breast to cancer, I had decided to face my fear and have the other one removed – I found that to be very empowering.
I’m so happy with my new shape – I feel as though I have the body that I always should have had. How extreme that it took breast cancer to get me there. I feel confident, brave and strong, not to mention that I don’t carry around two huge breasts. This is not to say that there are no down sides. There definitely are….. I’m numb under both of my arms and over most of my chest, I have excess folds of skin under both my arms and I have strange aches and pains and sometimes flashes of pain. But these are nothing compared with the joy of never having to wear a bra again if I don’t want to and, if I do, to be able to choose the size I’d like to wear. I’m thinking a C cup!!
I am trying to embrace my new life after cancer. I feel that I have made the best of a pretty bad situation and taken control of how I want to live. I want to advocate for the right of woman to be given all of the options after a mastectomy, and that includes the option to remain flat. And I want to increase the visibility of women who choose to live flat. I’ve discovered that I don’t need breasts to feel like a woman. I think that I look pretty darned great topless – a little different to the norm, but great nonetheless.
How many of you have seen a photo of a woman with no breasts or nipples? I had the enormous pleasure to have a topless photoshoot by my great friend and photographer, Sue Lacey last week. I’ve included a few of the photos here. It turns out that losing both of my breasts was OK after all.