Supporting women whose lives have been touched by breast cancer

Bilateral LD Flap
Latissimus Dorsi

by fz

I am writing this five weeks post-op, having recently had prophylactic bilateral mastectomies with immediate LD flaps and implants recon. Six months prior to this I was diagnosed with DCIS which contained both pre-cancerous and ER+ invasive cancer cells. Within a fortnight of diagnosis I had a WLE to remove the lump and was prescribed tamoxifen hormone therapy for 5 years. I am under 30, have two young children (I was still breastfeeding my youngest when diagnosed) and have a family history of hereditary breast cancer.

On my first appointment I was expecting an ultrasound and examination. I left the hospital in shock, having had the above, followed by a mammogram, being told they had found some pre-cancerous changes and then having a biopsy. The biopsy site was more tender than expected for a few days after the local aesthetic wore off.

Since that day I have felt all consumed by breast cancer. When I returned for my biopsy results I was devastated to learn that they had unfortunately found some invasive cancer among the DCIS. The days before my WLE flew by in a rollercoaster of emotion. After my WLE I felt awful emotionally – as I came round I was confused and had forgotten why I was in hospital, then the previous weeks came flooding back. I was indeed preparing to experience the same low with my prophylactic surgery. The worst pain after the WLE was around the site of where the lymph nodes had removed, the rest was just discomfort and irritating cording down my arm. After not being allowed to do any heavy lifting for two weeks (particularly my 18month old child), I found it took a further two weeks to get my energy levels back to normal.

Waiting to find out if my cancer had spread to the lymph nodes they had removed was awful. As that appointment got closer, I became more panicked. However, I was ecstatic to learn that my lymph nodes were clear and I would only require Tamoxifen, but no other treatments. I was one of the lucky ones.

It was not over yet. Due to my family history and young age I was recommended to have preventative surgery. Before this surgery, I must admit I was freaking out a bit, but felt I had no option with my risk of recurrence/new primaries being so high. I received very good care from my surgeons, oncologist and breast care nurses, so trusted them completely – my life was in their hands.

There are various reconstructive options, but being rather slim, my best option was latissimus dorsi flaps combined with implants.

The surgery took 7 hours and I needed a blood transfusion. The first 3 days were really quite hard. I had to give myself wee goals like sitting up by myself – I was so smug the first time I managed to walk to the toilet by myself. I felt really awful in the mornings, but after a couple of hours I'd feel better when I was less sore and had managed to sit up/get out of bed. Luckily everything went really well, the skin grafts on the front survived and I didn't get any infections, so once I'd got all four drains out, I was pleased to go home early, on day 6 - I was expecting to stay in 7-10 days. The last two drains we're a bit sore to take out, as they'd been in so long.

Every few days I have felt improvement with my mobility, strength and the appearance of my scars. By week 3, I was managing short walks, but then during week 4 I had a bout of exhaustion that lasted 5 days. I think it is important to be active, so your muscles don’t seize up, but it is also important to listen to your body. My physiotherapist said it might get worse before it gets better and I didn’t believe her until last week! I usually have about an hour's nap most days - my aunty (who's a nurse) says you heal while you sleep, so sleep is good.

My front is completely numb, it's my back and sides that hurt most, it is usually bearable though. Sometimes it is a muscular ache, sometimes it feels like sunburn, sometimes there are short sharp flashes from the nerves rebuilding. Interestingly my pain was worse during that bout of exhaustion, so my body must have been busy repairing itself. I make sure I take my painkillers when I need them, but it is utter bliss when I find a comfy spot - I daren't move!

I am healing well and every doctor and nurse I've met have said what a good job the surgeons did. I don't have much to compare them to, but I think my new breasts look natural and they are a nice shape. They may look good, but I have no sensation whatsoever, so that will take some getting used to.

Before the op I was very worried that I would have low self esteem and feel disfigured, particularly on my back. The back scars run from my spine to my side along where your bra strap would sit, so are rather large - every week they are improving though - my plastics nurses told me to massage the scars daily, to improve the cosmetic appearance. I had fewer incisions on my front, which I was pleased about. I don't know how on earth they did it, but they managed to do it all through the new large areolas on the front (I was expecting additional incisions). They took skin grafts from my back for these and ended up keeping my right nipple and sharing it between the two. It's been nice to have everything reconstructed within the one surgery, so that all I have to do in a few months is get the nipples tattooed and any tidy-up that's required.

My young daughter is very curious and wants to look at them now and again which has helped me to be less shy. My partner has been wonderful, he is my rock, even if at times I have had to reassure him. Now I know we can get through anything life throws at us. I feel okay getting changed in front of him, why shouldn’t I? Plenty of doctors and nurses, my mum and sisters, a couple of friends and my kids have all seen my new boobs and the scars on my back. What can I say – I’m an exhibitionist! Well, I admit I like letting close friends see the long scars on my back and hearing they’re sharp intake of shocked breath. Am I sick and twisted? Yes! But it gives them a good idea of what I’m going through. And also I wanted to show my younger sisters, to take the fear away as they'll be facing big decisions in coming years. Talking about it and getting reassurance in this way has helped me come to terms with this experience.

We were very open with my daughter about the procedures, though she was never aware of any threat to my life. I had read somewhere to imagine the breast is like a bowl of fruit, if a piece of fruit goes bad, you take it out the bowl. We used this analogy to help explain cancer and my surgeries to my daughter. My toddler son has become uncharacteristically clingy since I came home from hospital. When he is in the house he needs to know where I am and he sometimes points at my chest and says “sore”, as I told him that was why I couldn’t pick him up. He then says “soon”, as we say I will be better soon. I am counting the days down when I’m allowed to lift him again, use the buggy etc, though I expect I’ll be tired for a few months till I get all my energy levels back. I have been lucky enough to have an army of support from family and friends who have rallied round to help look after the kids. I usually find it difficult not doing everything myself, but I owe it to my family to get better as quickly as possible and that means no set-backs from heavy lifting before the 6 weeks have passed.

It’s been a tough six months, but we’re getting through it. The build up before the surgery was much worse than just getting on with the recovery. Whenever I feel down, I remind myself that I am one of the lucky ones, I had the time and option to do this. The feeling of relief alone is worth it. Now my recurrence risk is reduced considerably, I am much more secure about my future. Every year, every month, every minute is a bonus.