Caitlin's Story - "After seeing what my sister has gone through, having a mastectomy made sense for me."

30 Sep 2022

My name is Caitlin. I’m 35 years old. I haven’t had cancer. My sister was diagnosed with breast cancer in early 2018, when she was just 27 years old. Previously, there had been no history of breast cancer in our family, although my aunt had been diagnosed, she was over the age of 50 (a more typical age bracket for diagnosis).

My sister had found a large lump in her breast. Initially doctors turned her away – due to her age, they said they’d be fine. Eventually she found a doctor who listened to her and gave her a diagnosis of breast cancer and the BRCA gene. She had to go through a lot of trauma – six months of chemotherapy, a mastectomy… thankfully, she’s now in remission.

As soon as my sister was diagnosed, my parents also got tested for the genetic mutation. My other younger sister and I also got tested. We both carry the gene from our father’s side – all three sisters. My brother hasn’t been tested yet, and my father’s three brothers are now in the process of deciding to get tested.

After seeing what my sister has gone through, deciding to have a double mastectomy was a no brainer for me. At the time I was 32, so I was already in the age bracket where my risk of breast cancer was increasing. Many doctors told me to wait until I had children, but I couldn’t.

Having a mastectomy wasn’t a difficult choice for me to make. Yes, it will affect my chances of breastfeeding, but as I don’t have children yet, I had to decide what was best for me now. In the future, I may need to look at having my eggs frozen, or having my ovaries removes, but it’s not a consideration for me right now.

Even though the decision to have the operation was obvious to me, the mastectomy was one of the hardest things I’ve every physically gone through. I’m a relatively active, strong person, but after the operation, even three years later, I’m still building up my strength.

The mastectomy involved a reconstruction, where they created bat flaps for me using the fat from my stomach, so I don’t have implants. But I have a scar from one hip to the other, plus scars on my breasts. I did retain my nipples.

The scars can make me feel self-conscious. I’ve never found my diagnosis or my operation difficult to talk about, but scarring is different. When you’re intimate with someone for the first time, the evidence of my journey can be confronting. But they are my badge of bravery.

Pink Hope has been amazing for me. I found my gynaecological oncologist through their recommendation; it’s a great network to be part of. There’s not a lot of people out there in the same situation as me, so it’s been wonderful to tap into their resources. My situation has meant that while I didn’t need urgent medical attention, I still needed advice and a specialised type of attention. Pink Hope found that for me.

I’ve been happy to talk about my journey – at work, amongst my friends, and of course with my sisters, especially my sister who has had breast cancer. Telling people what can happen, and what was gong on for me during my operation made them feel less uncomfortable. Instead of trying to hide it, I was open about it all. It made it less scary, for everyone.”