Leanne Kaye, a campaigner for awareness on pre-emptive surgery for those with the BRCA gene mutation which can cause breast and ovarian cancer, speaks to JLife’s Evangeline Spachis about her new book detailing her personal journey.
Speaking to Leanne Kaye, as she sits overlooking the beach in Israel, it is impossible to not envy her current outlook, both in location and her outlook on life. As a campaigner and writer, having just released her first book, I’m a Previvor: My Secret Legacy, detailing her mother’s experiences of cancer, subsequent death and her own decision to have a mastectomy in order to not repeat her genetic fate. Termed on the dust cover as “a memoir from an ordinary girl who finally took control of her life”, it has taken her around the globe since its release, including a book tour to New York and back home to the North West to speak at Bury shul about her life and crusade to get more Ashkenazi Jewish women tested for the BCRA gene.
Some types of cancer – mainly breast, ovarian, colorectal and prostate – can be strongly influenced by genes and run in families. Having a variant BRCA gene greatly increases a woman’s chance of developing breast cancer and ovarian cancer, and high profile examples of individuals electing to have preventative breast cancer surgery such as Angelina Jolie, are starting to make BRCA-positive people more open to considering their options. For Leanne, it was the right course of action to take, and her experiences with her mum’s illness motivated her decision: “It’s a legacy that I carry on from my mum. She was very much motivated to wake people up and to say that even if you have to remove the breast, it’s better to be alive.”
When Leanne was given a 90% chance of having breast cancer before the age of 45, she opted to have a double mastectomy and then reconstructive breast implants, but understands that this might not be the way forward for everyone. It’s simply about having the information and the power in your hands to decide what’s right for you: “It’s about preventative medicine, even if you decide to not have surgery,” says the writer and campaigner.
Fundraising for charities that help those with cancer and those who need support after being tested for the gene has also tied in with the promotion of her book, along with popularising the phrase she feels most represents who she is – previvor. “It’s a fairly new phrase which FORCE (Facing Our Risk of Cancer Empowered) came up with” Leanne explains, “It’s a blend of ‘pre’ and ‘survivor’ and is someone who is an unaffected carrier of cancer who has not been diagnosed with it but has survived the predisposition or higher risk, due to certain genetic mutations.
For me, it’s really about shouting loud and making people more aware. A lot of people think you can cure or live with breast cancer these days, and unfortunately that isn’t always the case and it isn’t something that should be put off for another time. That’s the key message.”
It took Leanne a year to put the book together, working as a nanny and raising her three children at the same time. As a result, it also gave her the impetus and confidence to relaunch as a freelance marketing writer and focus on her love of writing for the first time.
“I was a bit nervous at first,” Leanne reveals, but that was because a lot of the book was taken from Leanne’s own diaries, which she began at the age of 11 and continued throughout her life, especially around the time her mum was diagnosed with cancer, when she was 15 years old. “The first half of the book is very much about her diagnosis, journey and her unfortunate fate of passing away at the age of 48…the reviews from people who have read it and have said that they felt that they got to know my mum is something really special. I feel like it has given her immortality.”
On this journey of personal discovery, Leanne has been party to plenty of support, from her “amazing” Israeli surgeons to her father and two brothers, along with all the responses and calls for advice from readers, ranging from familial concerns or worries about loss of sexual or conjugal impulses: “One of the things that surprised me from doing a recent YouTube interview was the amount of messages I got from people about being a single mum. All I can say is that it isn’t something that can wait, even if a person is going through a separation or a divorce. I want to be a beacon of light and a wake-up call to other women.”
“I’m just going keep shouting as loud as I can and be out there as much as I can with this project so that people hear it. It isn’t a transient moment for me, I feel it’s now my new path and I am passionate about supporting other people and raising awareness of charities and accessibility for testing.”
To buy I’m a Previvor: My Secret Legacy, visit Judaicawebstore.co.uk or to find out more about Leanne’s journey, head to Previvorlife.com.
