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Lisa’s Story

28 Jul 2020 by Pink Hope Team
Lisa’s Story

I’m Lisa, I’m 44 years old and married with an 8-year-old daughter.  In February 2017, I tested positive for the BRCA2 gene mutation.

I am thankful that my family is one of the “lucky ones”. My mum has had breast cancer twice and her sisters have also had their own cancer diagnoses, happily all three siblings are alive and healthy and in their 70s and 80s. And yes, all 3 siblings have the BRCA2 gene mutation.

As my mum was born in Italy and immigrated immediately following WW2 in the late 1940s, she has no documented family history and had a vague memory of a “cousin or aunty passing away at a young age”.

We don’t know whether the gene was passed down from my mum’s maternal or paternal side with neither parent or their siblings having experienced breast or ovarian cancer. So I can say, that there is a huge component of imposter syndrome for me – I realise the significance of having this gene mutation but have not experienced the trauma of other families where many parents, siblings and extended members have passed away too soon from these aggressive cancers.

I studied as an occupational therapist and worked for 10 years within the hospital system so felt comfortable in using the “diagnosis” to proactively take control of my own health and health outcomes. In June 2018, when I was 42, I underwent Bilateral Salpingo-Oopherectomy (BSO). I sought three medical opinions prior to this surgery as I realised that I was slightly younger than recommended and although two of the three suggested that I “wait a couple of years”, I am completely comfortable with my decision. It means I no longer have the anxiety of worrying whether something is “brewing” without adequate screening techniques in place.

Healing from surgery was quick and uncomplicated and I was in the minority who were allergic to the oestrogen patches so it took about 8 months to find the right medications to keep my heart, bones, brain and emotional wellbeing in good health. Post-surgery, I have increased my sport and changed my workouts to ensure I’m doing everything I can to maintain bone density and my general health and wellbeing.

I am now on the public waiting list for bilateral mastectomies and reconstruction but understand with COVID and the suspension of Category 3 waiting lists, the wait may now be longer than originally anticipated. But with fantastic specialists and routine testing in place, the wait should be manageable.

I don’t want to lie to you – I do find the six-monthly screening tests and medical appointments seem to come around in my calendar way too quickly and they are always niggling away in the back of my mind. Also, having to explain to a new male boss why I need to take time off to attend five appointments over three weeks is uncomfortable and something I wish I could avoid.

The biggest lesson I have learned, as corny as it sounds, is that knowledge is power.

I live in the 21st century where not only genetic testing, but also preventative surgery is available and on-line resources are plentiful, why wouldn’t I use this information to avoid cancer and be as healthy as I can be?

I recently had a work colleague share with me that his wife died of cancer at aged 48 (only a few years ago) and if she had had the opportunity to undergo genetic testing to survive she would have grabbed it with both hands. I’m thankful that I have strong support from my husband, family and close friends to feel empowered to make these decisions.

I had not heard about Pink Hope prior to 2017, when I was referred to them by Peter Mac. Since 2017, I have attended each annual information session, which I have found invaluable as an opportunity to listen to top specialists about the latest advances in medical management. And I have attended the Pink Hope High Tea for the last two years, along with a group of friends and family. Although I’m not an active member of the social Pink Hope community, I do appreciate the opportunity it offers those of us impacted to share stories, ask questions and seek support.

I am hoping that when my daughter becomes an adult, she won’t need to undergo preventative surgeries as there will be a cure. If this isn’t possible, I will give her advice to remain informed, seek as many medical opinions as you need to feel comfortable in making a decision and to talk openly with friends and family.

 

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