Katie Kaye, 35, is a science teacher. She lives in Borehamwood with her husband and two young daughters. She has a BRCA 1 gene mutation.
“My mum died of breast cancer when I was eight. She was 35. I always knew deep down that I would have the mutation because I am very similar to her.
When I was 21, I found a lump in my breast. Fortunately, it was benign, and I didn’t need any surgery.
When I decided to take the BRCA test at 24, I wasn’t shocked by the result. But I put it to the back of my mind and decided that when I was done having my kids and breastfeeding, I’d have preventative surgery.
My daughters are now four and a half and two. In August 2022. I went to talk to my GP about getting a prophylactic double mastectomy. He was able to put me in touch with a genetic counsellor, who then referred me to the surgical team.
When I met the surgeon, all the anxiety I’d put to the back of my mind rushed out. I suddenly panicked that I had left the surgery too late and that my kids weren’t going to have a mother. It was such a relief when the scans prior to the operation all came back clear.
I wasn’t upset about losing my breasts. I felt that they had done their job — they had attracted a man and breast-fed my two daughters. I was ready to let them go.
In December, I underwent the first of two surgeries. Luckily, it went very smoothly and fortunately, the recovery was very easy. I was also spoilt rotten — cookies kept arriving in the post.
Once my breast surgery has been completed, the anxiety will have really lifted in terms of getting breast cancer
I’m really happy with the result. Once I have had the second surgery to remove the remaining breast tissue and have reconstruction, the anxiety will have really lifted in terms of getting breast cancer.
I feel fine about having a salpingo-oophorectomy (the removal of the ovaries and fallopian tubes) in the future as we’re not planning on having any more kids. I don’t love the idea of going through a surgical menopause, but hopefully HRT will work. For me, the breast surgery is much more pressing since my mum died of breast cancer when she was 35, the age I am now.
After I found out I was BRCA1 positive, I passed the information on to family members in case they wanted to get tested, but because my cousin didn’t have a close relative with cancer, it was very difficult for them to get tested. So, it’s great that they are now rolling out the programme to anyone with a Jewish grandparent.
Throughout the process, I decided I would publicly share what I was going through on Instagram. Seeing what other people had gone through gave me a sense of control, and it’s nice to know that through social media and charities such as Chai, the support is out there.
Ignorance can be bliss, but knowledge is power. You can bury your head in the sand, but it won’t change the situation.
@thisbrcalife
Adam Cramer with his children, Benji, Isabella and Yasmine
Adam Cramer is a 58-year-old chartered accountant with three children. He Iives in Mill Hill and is a carrier of the BRCA1 gene mutation.
My sister was diagnosed with very aggressive breast cancer at the age of 22, a few weeks after her second child was born. She was given six months to live. That was 34 years ago, so it’s a miracle that she is alive today.
We looked into our family history and started to see a pattern with breast cancer, so she took a BRCA test and was found to be positive, as was my dad.
10 years ago, I rowed across the Channel for the breast cancer support charity Future Dreams without realising I was carrying a five-and-a-half kilo tumour in my abdomen. I was diagnosed with retroperitoneal liposarcoma, and while I was recovering from surgery, a doctor suggested genetic testing to see if there was something genetic — not BRCA — which was connected to the cancer. At the same time, they tested for BRCA, and I was found to be BRCA positive.
This was a bigger punch in the guts than finding out about my cancer. As a parent, BRCA isn’t something you want to pass on to your loved ones. I have two daughters, aged 22 and 21, and one son, who is 17, and I suddenly understood the guilt my father had in terms of my sister. You want to do what’s best for your kids and knowing that you may have passed on the BRCA through no fault of your own is a terrible feeling. It would be incredible if my kids were found not to have it.
I agonised about telling my kids about the possibility that they were carrying the BRCA mutation
I agonised about telling them about the possibility that they were carrying the BRCA mutation, maybe because they knew how ill their aunt had been. One of them is the same age as their aunt was when she was diagnosed with breast cancer, so it’s been a big worry.
After ongoing family discussions and going to Chai for a bit of counselling, my daughters have decided to be tested together so they can be there to support one another. My son will get tested in due course.
The BRCA programme is amazing since it makes testing a lot more accessible and means that if someone is a carrier, they can do something to prevent cancer. Ultimately, it will save lives.
It will also raise awareness, take away some of the taboo around BRCA and make discussion of the subject much easier, especially for parents who need to tell their children they might be carrying the mutation.
For more information and to register for a BRCA test, visit: jewishbrca.org
NHS Jewish BRCA Testing Programme Helpline:
020 3437 6001 or email: jewishbrca.programme@nhs.net
To learn more about the NHS Jewish BRCA Testing Programme, go to: https://www.thejc.com/news/life-saving-screening-programme-launched-in-the-jewish-community-uo7r5lp0
To read more about people’s personal experience of carrying the BRCA gene mutation, go to: https://www.thejc.com/lets-talk/i-was-a-brca-carrier-i-had-to-decide-whether-to-have-surgery-e0suid0o
