Risk Reducing Surgery
Posted on 28th September 2018 at 08:15
When I was 15, my mum became very poorly with an aggressive form of breast cancer. All her life she had been affected by lumps in her breasts, but up until this point none had been deemed worrying. When she was diagnosed, my mum’s first question was whether there were any genetic links, meaning my sisters and I needed to worry about it, she was told there wasn’t. After chemotherapy and radiotherapy, it was clear that my mum was going to lose her battle to cancer. It was while she was in hospital I first became aware of lumps in my breasts. Obviously this was a massive shock and I wasn't quite sure what to do. Luckily I was seen very quickly by doctors at the hospital and told it was nothing to worry about. My mum passed away in May 2011, just before my 16th Birthday, from that point on I made it my mission to live in a way that would make her proud.
During my gap year working in horse racing Berkshire, I went to the hospital for a check up with a general surgeon. Again I was told that the lumps in my breasts were fine. However, it was at this appointment the surgeon asked if any had mentioned the large lump at the base of my throat. Funnily enough, I’d had someone comment on it not long before this. The surgeon then arranged for me to have an ultrasound of my neck, this didn’t initially result in much. I was given results that I had suspected Sjogrens Syndrome. Not long after this appointment I received a letter in the post. The letter itself was from the surgeon I had seen to a genetics consultant. The letter stated that he due to the breast lumps and the lump in my neck he thought I might have Cowden Syndrome. Cowden Syndrome is a mutation of the P10 tumour suppressor gene, the condition increases your risks of several cancers including; thyroid, skin, kidney, but most notably breast cancer. Now I am forever grateful to this surgeon for noticing this, but this is not something you want to receive in the post with no prior mention of it! They tell you not to google medical things, but even the smartest people can’t help themselves..
Genetics and Cowden Syndrome
Fast forward to being 19 years old, just about to start university I finally saw the genetics consultant. She pretty much told me I didn't need a blood test and that she was sure I had Cowden Syndrome. She said she would start referring me to specialists so that they could get a monitoring plan in place. I had the blood test so they could give me the diagnosis and a few months later I got the news we were expecting. One of the first specialists I saw was an endocrinologist as the lump in my neck had grown. He took some biopsies while I was awake in clinic. The biopsies were inconclusive so he suggested my thyroid should be taken out as soon as possible. Having just started university, I told him he had to to wait till the christmas holidays, luckily he agreed. After this surgery I went home and had a really bad choking episode where I stopped breathing and had to be admitted to hospital again. This was a fun night in A&E where they stuck cameras up my nose and down my throat, alongside lots of X-rays. It was because of this they wanted to see me really quickly post op - or so we thought.. I went back to see the doctor who’d done my surgery and macmillan nurse was there to help deliver the news I had thyroid cancer. After this appointment I had a few months of tablets 3 times a day prior to my radio iodine therapy, which I made the doctors put off till my easter holiday, this was fine and I spent 3 days in isolation. The only rubbish thing about this was the room I was in did not have a window. Following this I had 2 PET scans, which are the longest things ever! These were 6 months apart to ensure I was clear of the cancer. Everything went as it should and I was given the all clear.
The breast bits
Not long after I’d been diagnosed with thyroid cancer I went for a breast checkup, this was with a new surgeon I’d never met before. By this point I’d done enough reading about Cowden Syndrome and I knew I wanted a prophylactic mastectomy. I must say at this point I didn't realise how lucky I was to have been referred to such a great surgeon and I probably should’ve been a bit nicer to him. He told me that it was very likely I could have a mastectomy, but it was not a decision to be made lightly. At this stage I was still pretty naive and embarrassed about my condition and found it pretty hard to talk about. I had a fair few lumps in my breasts and we decided that ultrasound and MRI scan was the best way to monitor to things for now.
The Risk Reducing Surgery Pathway
The year after this, consisted of several ultrasounds, biopsies and a lumpectomy to take out a lump we weren't sure about. To anyone reading this, breast biopsies are not that bad, after the area is numbed you don’t feel a thing. Throughout all of this I can honestly say I am so grateful to my surgeon and his team for the great care I’ve received. Anytime I was worried about something I could phone up and an appointment would be arranged. Every appointment I was put at ease,
this was so important when you bear in mind as a young girl at 20, it’s not the easiest to sit there with your top off being stared at! My surgeon was incredible at ensuring my appointments and procedures never clashed with university. He also ensured I was seen by a Psychologist pretty early on, this was to ensure I understood the potential emotional impact of the mastectomy. I understood why this was important, but it was an interesting experience. She told me my life was tragic, to which I responded - I think you are meant to be making me feel better about this. I think something that’s worth noting here is some women feel strongly about breast feeding. Not being able to breast feed is not something that bothers me. Additionally, for some women their breasts are a massive part of their identity, again for me they weren’t. But these are all points the Psychologist and my surgeon discussed with me.
It was after my first MRI scan, which raised more questions than answers, we decided it was probably wiser to do my mastectomy sooner rather than later. The MRI consisted of lying on my front and having dye injected into my arm halfway through. I think the hardest part of this was not falling asleep! At this point I happened to be in my second year of university, so we made a provisional plan to do my mastectomy when I finished university. However, halfway through my third year I found another lump which was awkwardly positioned so we couldn’t biopsy it to make sure it was ok. It was at this point my surgeon put the idea of a two stage mastectomy forward. I was very pleased he did this as I was pretty scared as to how I’d deal with it all being done at once. The first stage would be augmentation and the second stage would be the mastectomy. The reasoning behind this was we could ensure that I was happy with the way everything looked. It also made me happier because it would be less taxing in terms of recovery.
Bilateral Risk Reducing Mastectomies and Implant Based Reconstruction
My surgeon was brilliant and talked me through the procedure many times to make sure I understood it. He also ensured a plastic surgeon was involved so that I knew all my options. One of the biggest decisions was whether or not to get rid of my nipples. There is a small chance you can get cancer in this part of the breast, therefore to me it was a no brainer to get rid of them as well. We initially planned to do the first stage in the Christmas holidays of 2016, however this did not happen in the end. I will admit I took this pretty badly, to the point I was having second thoughts about it all. I remember at the appointment I found this out, I was doing my best not to cry. Luckily following this, my surgeon rang me up and talked some sense into me.
Pre Mastectomy Breast Augmentation
We then went back to planning to take the lump out, then doing the mastectomy after university had finished. However, I put forward the idea of doing the first stage of my mastectomy at the same time as removing the lump. My surgeon agreed to this and the augmentation was done in March 2017. I have to be honest the augmentation was very painful. To this day I think people who have augmentation by choice are crazy, but each to their own. The reason it is so painful is because the implants are placed under the chest muscle. I spent two nights in hospital and was sent home with tramadol. In hindsight tramadol is not something you should take if you can help it. When I was home I really struggled to get in and out of bed. This was partly to do with scoliosis surgery I had done when I was younger. However, this resulted in me waking my dad up in the middle of the night because I couldn't move. We worked out if I slept on a rolled up duvet, I could move myself about, I did this for two weeks. I was working in a cocktail bar at the time so had to take a few weeks off work, but I was kept busy writing my dissertation.
Life After Surgery
After my first surgery, I finished my degree achieving first class honours. I then got offered what is essentially my dream job. I went down South to start the job and then came back in August 2017 to have the mastectomy surgery done. My surgeon’s words before this operation were you’ve done the hard work now it’s our turn. I think in a nutshell that explains how much easier this surgery was than the last one. My plastic surgeon had warned me that I may find this surgery more difficult emotionally. I think this was partly to do with the nipples being removed. Physically, I was back to normal after a week and back at work two weeks later. Emotionally it was a lot more difficult, but for the days I wanted to cry and be down about it, I’d just remind myself that it could be ten times worse and in reality there wasn’t anything to be down about. Throughout both my surgeries my friends and family were there to ensure I recovered and was looked after well.
Two more things I would like to mention, that scared me a little are drains and scars. When I woke up from each surgery I had drains in each side of my chest. These were not painful, but they were uncomfortable, when they come out you can actually feel the tube pulling, it is an odd sensation. The scars from the surgeries were both impeccable, however having scars where your nipples used to be takes some getting used to.
Fast forward to now, I am working full time, waiting for a date to come through for my nipple reconstruction, I feel incredibly grateful to have the chance at a worry free life. To anyone contemplating this decision my advice is to go for it. My future isn’t completely hospital free, but the odd appointment is nothing. A mastectomy is a small price to pay to live a normal and happy life.
Tagged as: Risk Reducing Surgery
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