Leah's Story: “My cousin’s death prompted my fight for survival”

24 Oct 2022

Leah, 42, is married with three children, 16, 14 and 11. Her mother, grandmother and great-grandmother all had breast cancer and several of her cousins have been diagnosed with breast and ovarian cancer.

“When I met my husband 18 years ago, I was up front with him: I’ve known since I was 18 years old that I had a genetic mutation for cancer. I’m one of three daughters – my middle sister doesn’t have the gene, but my youngest sister does.

“My mother had encouraged us to get genetic testing done. A familial cancer clinic in England wrote to us as our English cousin had discovered she had the gene.

“I remember seeing my grandmother’s scar from her mastectomy. I was just a child, but I still remember it. It was quite brutal: very prominent.

“So, when I met my husband, I laid my cards on the table: I wanted to have children, but due to my genetics I needed to have them sooner, rather than later. It was important to me that I was with somebody who understood my timeline.

“My husband is in the Defence Force. He’s away every two weeks. During our first year together, he was away for eight months out of 12. It makes it hard when you’re trying for a baby! We were blessed to have fallen pregnant and nine months after our wedding, I gave birth to Riley, our eldest. Almost two years later, I had Cooper. I knew the clock was ticking to have children before I dealt with my genetic diagnosis. We were lucky to have had our third – a daughter – in July 2011.

“My cousin Tanya also inherited the gene. She was on her honeymoon when she found a lump in her breast. When Daniel and I got married she attended our wedding with a pink bandana around her head – she was in the midst of chemotherapy. Unfortunately, after four years in remission, she died last year. The cancer had returned – spread throughout her body.

“I’d already been having six-monthly MRIs when my cousin died. When I told my oncologist and breast surgeon Professor Bruce Mann, that my cousin had just died of breast cancer, he explained that I was now a category one. This meant it was time for me to make some decisions.

“Even though I was breastfeeding at the time, I met with a gynaecologist who recommended a hysterectomy due to my increased risk of ovarian cancer. I went into medical menopause, although thankfully I could keep breastfeeding my daughter. I was so relieved. I knew she’d be my last child, so it meant a lot to me to be able to continue to do that.

“I then made the decision to have a double mastectomy. I had the transplant procedure, which took 14 hours. They cut you from hip to hip, and remove your tummy fat. cauterize and clip all your veins and blood vessels in your abdomen; they even relocate your belly button. From the removed fat they mold them into two tissue molds. They remove your breasts, then micro-surgeons put the tissue molds behind your chest wall an reconnect the blood vessels so they have their own blood supply.

“My husband and I went for a ‘goodbye breasts’ dinner the night before my operation. It helped me to prepare for what was going to happen the following day.

“When I woke my ‘new’ breasts were black. But I felt really good, even though I couldn’t walk very well and I had drips and bandages everywhere.

“My breasts are never going to look normal. My nipples look like lollipops, with a stick going down my breast – I had an infection in my left nipple, so there’s a little bit of puckering. I’ve had nipple tattoos which look real. The worst part is the ‘phantom itching’ around the nipple area. I don’t have any sensation in that area, but this ‘itching’ will occur every now and then.

“My breasts look fantastic. Yet, I don’t have any feeling in my breasts. This really changed my life because my breasts are a big part of me, as a women. It’s a big part of your sexuality, so your sex life changes. It changes who you are as a person.

“I’m now the same age Tanya was when she died. So, I’m incredibly grateful I’m not in a box in the ground too. I’m here for my kids, to watch them grow. I know how lucky I am.

“That’s why it’s so important to talk to other woman. To be aware of what you need to do: check your breasts regularly. Get genetically tested if you need to.

“We live in a regional area. It’s not easy to catch up with people. That’s where Pink Hope has been so amazing. The local cancer group to me wouldn’t let me join because I didn’t have breast cancer. So the online support I’ve received from Pink Hope has been wonderful. I’ve been able to get advice about medical menopause, how to deal with hot flushes, the trepidation leading up to surgery and the aftermath. One member sent me a bottle of mango body wash. I took that into the hospital with me. Even today it reminds me of being in hospital afterwards, recovering. It’s got such a strong, positive emotion for me.

“Going through this experience has made me stronger. I don’t suffer fools. I prefer animals! I have two horses who help me mentally whenever I’m feeling down. I just take them out for a trail ride and ride through the bush. I close my eyes and listen to the kookaburras singing. That’s what matters. Being on a horse is like rain on concrete after a hot day; it’s like smelling a baby’s head for the first time. When I’m with my horses I’m home.”