BRCA1 double mastectomy and reconstruction

Hi Jadey,

Sorry to hear about your situation and I'm not sure really what to say to help. I have a faulty BRCA1 gene and underwent a double mastectomy in March this year following a cancer diagnosis in 2021 (I was 35 at the time). I have never really had a fear of operations, but my mastectomy was the 6th time I'd been under anaesthetic in 2.5 years and I must say my anxiety increased a little with each operation, the more I thought about it I didn't like the idea of it, even if it was nowhere near the level you are experiencing. I was glad when I had my mastectomy to think I (hopefully) wouldn't need any further operations for a few years.

I will say that for each of my operations, the anaesthetic was absolutely no problem, the team were very professional, friendly and reassuring. The recovery from the operation in general was very good too. Your surgeon and anaesthetic team will be very experienced and I am sure you will be fine (I know it's easier said than done).

Three things that helped me before my mastectomy:

I tried to not focus on the surgery itself, but I pictured myself one week after the surgery and thought about how good I would feel when the operation was done so the hardest part over, my risk was reduced and I was back at home well on the way to recovery. It perhaps sounds silly, but it helped me immeasurably.

I kept busy before the operation too to avoid thinking about it too much - I did lots of walks, meal prep and exercise. I felt organized, mentally in good shape and as if I had control over the situation and therefore, ready for the operation.

I tried to always remember why I was having the operation in the first place. I focused on the positives of what I was doing for myself. As hard as it is at times, it's great that we have the power to act to greatly reduce our future risk of breast cancer.

Have you spoken to your surgical team or GP about how you feel about the operation? Is there any counselling or prescription they could offer you to help relax you? If you have any questions about the surgery that I could help with to put your mind at ease, don't hesitate to ask!

Wishing you the best of luck x

Hey Jadey, I hear your anxiety and can resonate. I found out I’d Brca 1 around the same time ago as you. I’m also finding the idea of having my breast reconstruction incredibly scary. Thank you Rose222 for sharing your experience. My last appointment with the breast consultant I was in tears telling him I love my boobs! I feel like being anxious and scared is totally normal. 

What’s helped me is the control piece, I get to decide if I want to do this. My breast consultant heard my worries he was non judgmental and verbalised how he understood this is such a hard decision to make before the line in crossed into having cancer. I would invite you to voice some of your concerns to your medical team. If your fears are mainly around the anaesthetic they could propose some ways to help?

Advice for pre op I would suggest and am trying to do this is exercise. It’s helping me process what’s happening, when I’m worried getting those endorphins going brings a bit more ease into my body. Finding some people who you feel safe with speaking about what’s happening. 

For post op I plan on allowing myself the time my body needs to recover. I had surgery to remove my tubes 7 weeks ago and found it hard to not push myself to get out of bed and move around. I ended up having to be re admitted for infection and spent a sleepless night trying not to beat myself up. So yeah self compassion on this path has been important for me.

As Rose222 said, understanding the why of why you’re choosing to do this and remembering this when the anxiety and worry comes is helping me.

Take care of yourself and if you’d like to chat or ask me anything I’m here,

Marie x