Fairly recently I was diagnosed with a BRCA1 gene mutation. This massively increases the risk of breast cancer, so much so it is almost a case of when and not if. Many women in my family had contracted pre-menopausal breast cancer and died from it before they reached 40 and being a mother to 2 young children, I decided risk reducing surgery was something I needed to do.
So I made a decision to have a bilateral mastectomy with a DIEP reconstruction. Making the decision was the easy part. Waiting for the operation wasn\’t. There was so much to plan for with work and childcare and not knowing when the operation was likely to happen made life feel very stressful for a while. I also now had the added anxiety that an agressive breast cancer was now a very real risk.
I\’d opted for a DIEP reconstruction as I wanted to avoid further surgery later down the line and liked the option of having breasts that aged with me.
5 months after I\’d opted to have the surgery, I got a hospital date. This was cancelled at short notice but very quickly re-arranged. I was admitted to St Thomas\’ hospital the night before the operation. My surgeon came round and made his markings and we discussed how the operation would go. At this time, I opted to try a nipple graft. I couldn\’t sleep very well and at 7am the following day I was taken down to surgery. The staff were all wonderful and helped relieve my anxiety.
The next thing I remember was waking up in intensive care recovery some 12 hours later. I was very disoriented from the drugs and was lying in what\’s called a bear hugger, which is like a quilt wrapped around that blows hot air around you. I couldn\’t move and my arms surprisingly were the most painful part of me (I later learnt this is as a result of them being in a certain position during surgery). I had a morphine pump which helped with the pain relief. In actual fact the pain was less than I had expected and I felt more uncomfortable than in pain.
THe first night passed in a bit of a haze. I didn\’t sleep much and was woken very regularly for various checks, one of which was a doppler being used on both breasts to check the blood flow. It was very noisy. I had expected to be heavily bandaged but actually I had loose dressings on my breasts but lying down I couldn\’t see much. I had 4 surgical drains and several drips.
Before I went into hospital, my breast care nurse had likened the part immediately following the operation as like a hangover. I couldn\’t agree more! I had very little appetite and found it hard to concentrate but each day got a bit better, although I would describe recovery as more of rollercoaster than a straight upwards trend.
By day 3 I was able to sit out in a chair and shuffle to the toilet on my own. It took a few days before I felt I could fully straighten up because my abdomen scar felt so tight.
I opted to have very few visitors as I really didn\’t have the energy and felt I needed sometime to come to terms with the changes. By day 8 I was ready to go home. By this time I was starting to enjoy hospital and going home to real life was actually quite overwhelming.
Apart from hospital visits, I didn\’t leave the house for the first 2-3 weeks. Recovery was up and down. I had some infection and unfortunately my nipple grafts didn\’t take. But gradually my strength returned although it did take longer than I\’d expected. By 6 weeks I was able to drive again and by 8 weeks I felt 90% recovered. I did find I tired more quickly than normally. By 11 weeks I was back to work and life returned to normal. This is a tough operation to do in hindsight with small children. It was hard to lift and play with them for a while but it was manageable. I think the key thing is to get as much rest as you can in the first few weeks so you heal faster. I overdid it some days and that was a mistake.
Following reconstruction, I have ended up being a totally different body shape. I had fairly large breasts before but opted for a much smaller reconstruction. The up and downside to this was that nothing fitted me any more (you lose some inches round your waist) so I was justified in clothes shopping but I didn\’t know what suited me anymore! I also found it hard to find bra\’s that fitted nicely and were comfortable.
18 months later, I have just finished the last of my tidy up surgery and nipple reconstruction. I am amazed at how well my scars have healed, some are barely noticeable now. I can honestly say I don\’t give my breasts more a few minutes thought these days. I am very happy with the outcome, they feel like my breasts and I feel comfortable enough to wear a bikini on the beach. The loss of sensation in my abdomen area as well as my breasts was a surprise but I have got used to it. I consider myself very lucky to have had this operation and my experience of the NHS has been amazing. The surgery is big adjustment and of course, it would have been great not to have had to have it but I have no regrets about anything at this stage.