In 2014, my Mum visited her doctor following a small, unexpected bleed and was diagnosed with a cyst in her ovary. She was almost 50 years old and given her age, proximity to menopause, the knowledge of a long family history of cancer and the fact that her sister had passed away ten years earlier from breast cancer, her doctor recommended that she have a hysterectomy.
Post-operative tissue testing however revealed a very early stage cancer growing in the opposite ovary, which although had not spread, required her to undergo 11 rounds of chemotherapy.
The chemo was really tough on her, she experienced almost all the side effects and was very sick throughout her treatment.
When her chemo was finished, and due to some previous genetic testing within her family for the Ashkenazi gene, which had been negative, it was suggested that she be tested for a BRCA mutation. She tested positive for the BRCA1 gene mutation which led to both my sister, Karni who was 21 at the time, and myself, at 23, also being tested.
We both tested positive for BRCA1 and quickly fell into a regular screening routine with yearly MRI’s and six-monthly check ups with a breast surgeon. Conversations began between us and our doctor’s around when we should consider having risk reducing mastectomies. It was such a massive positive having our own team of specialists keeping watch over us.
But in 2017 a small lump was detected in Karni’s breast during her annual MRI. She was 24 years old and all of a sudden it felt like Groundhog Day, going back to Mum’s unexpected diagnosis and chemo treatment. Luckily, the triple positive hormonal cancer was found very early at Stage 1.
Karni’s treatment included an initial 4 rounds of chemo, which went well, all things considered. We were at the same hospital that Mum had received her chemo and we even had some of the same nurses, it was so lovely the way they looked after Karni. And Karni coped really well, having seen Mum go through chemo she at least knew what to expect.
Screening following her chemo showed that the tumour had gone, which was wonderful news and she then moved forward with a successful preventative double mastectomy with tissue expanders, later swapped out for implants.
Mum then went on to have her own double mastectomy and due to my risk being so high, I was pushed up the waiting list for mine. I also had a successful preventative double mastectomy with implants.
We all recovered well and have been incredibly lucky, but what a big year 2017 turned out to be for us!
I am now 30 and after getting married in January this year, we are thinking of starting a family, but knowing I am high-risk has made us consider this earlier than we normally might have and we are considering all of our options around having children. I know that once I have had my children, I will go on to have further preventative surgery to reduce my risk of ovarian cancer.
I’m very aware of my risk and the difficulty in detecting ovarian cancer early and I find this can lead to me being triggered by things like ovarian cancer day and the white shirt campaign. As much as I support and give to these amazing organisations as much as I can, I sometimes have to, ‘turn down the volume’, to protect myself emotionally.
I also worry about passing on the gene to our children but I live with hope that by the time our children would need to be concerned, there will be new developments in science and medicine that mean they won’t have to face the same risk as us.
My advice to any young woman, questioning if they should be tested is – just do it. I feel so grateful and lucky that I know. I know what I need to do to manage my risk, I have a great team of specialists looking out for me and the knowledge I have makes my decision making easier.
And I always say that you should ask as many questions as you can, if something feels off, go and ask your GP about it. A piece of advice that has stuck with me, from a chemo nurse is, when you’re attending an appointment where you will be getting test results, always take someone with you. In the event that you receive news you aren’t expecting, they will be able to take over and take in all the information for you, ask the questions that you might not be able to and they will be there to support you as you process the information.