Lisa’s story – her decision to remove her ovaries, fallopian tube and breasts

12 Apr 2022

Lisa, has the BRCA2 gene mutation. She has had her fallopian tubes, ovaries and both breasts removed for preventative measures. Her mother and aunt have had breast cancer. 

“My mother was diagnosed with breast cancer in early 2000. She had the full regime of treatment and fully recovered. Then in 2008 the cancer returned in her second breast. Once again, had the complete suite of treatment and recovered.

“I rarely checked my breasts myself. I relied on doctor visits and my breast surgeon to check them for me.

“I remember calling the Cancer Council to ask them about genetic testing. My sister and I had investigated it after my mother’s first diagnosis, but nothing further had come of it. The second time she was diagnosed, we decided to get tested to see if there was a genetic link.

“In the ten years since my mother’s first diagnosis, the cost of self-funded genetic testing had fallen from $3000 to $450; there was now a long waiting list for appointments. We joined the waiting list, finally got tested and three months later got the results. I had the BRCA2 gene.

“After I received my results I had genetic counselling. They recommended I should have surgery to remove my ovaries and fallopian tubes to reduce the risk of ovarian cancer.

“I work as an allied health practitioner; I’m experienced in research. I wanted to pursue more information about this possible course of treatment and I sought three different medical opinions to help me make up my mind. This actually confused me further as each specialist had a different view on how I should proceed.

“Then I found Pink Hope and its amazing support. I posted my situation on the Pink Hope Facebook page seeking advice from women who had gone through a similar diagnosis and treatment. The common theme was to not to get too many opinions!

“I decided to go ahead with the surgery and had my ovaries and fallopian tubes removed in 2018. I felt as though a weight had lifted off from my shoulders. I no longer had to worry about ovarian cancer.

“Fast forward to 2019 and I was scheduled to see my breast cancer specialist. She advised me that it was time to discuss a preventative mastectomy on both breasts. Again, I did as much research as possible. I went to the Pink Hope educational sessions three years running and I felt extremely informed about my choices and surgical options.

“I told my specialist that I would be ready in a year. Luckily, she got the ball rolling then and there so I was already on the public health waiting list by the time the pandemic began. But as Covid dragged on and the waiting lists were put on hold, I became frustrated, not knowing if I could plan anything – holidays, work, life in general. I decided to go private and have my mastectomy.

“I’m a planner. I planned my whole treatment journey out. I had a lot of help from my friends and family and my husband has been extremely supportive. Without him, I couldn’t have done it. Having him beside me the whole way has been a real confidence booster.

“I found that having my ovaries and fallopian tubes taken out had a greater impact on me than having my breasts removed. I had to grieve a little, mourn the loss of my ovaries, even thought we had a daughter and hadn’t planned on more children. But ‘planning on it’ is different to ‘not being able to,’ the finality has an emotional impact on you.

“I also went into surgical menopause. None of my friends at the time were in menopause, so I found it really helpful to talk to women in the Pink Hope community for advice and support.

“Thankfully, I was in the small percentage of women who could go on HRT which helped with some of the menopausal symptoms – insomnia, hot flashes, mood swings. If I hadn’t had people to talk to about what I was going through, it would have been even harder to handle.

“I tell people that if they find themselves in my position to do as much research as possible. And to find a community. The Pink Hope website and Facebook pages were fantastic.

“Last year I reached out to another Pink Hope member who had had a similar diagnosis and treatment plan to me for some advice. She immediately said yes. I couldn’t believe a complete stranger would be so open and helpful. Over a few days we chatted and shared advice and she answered my many questions. That was so helpful in helping me understand my recovery.