By Luan Lawrenson-Woods.
Jill and her daughter, Kirsty, have a strong history of cancer in their family, but have no known gene variant.
For as long as Kirsty, 30, can remember, breast cancer has been a part of her life. Kirsty and her mum, Jill, 63, who was diagnosed with breast cancer 10 years ago, are of Ashkenazi Jewish heritage and have a strong history of cancer in their family but have no known gene variant.
“I lost both my twin and my mum to breast cancer”, Jill says, “I'm a survivor of 10 years now and I have another sister who's recently completed her treatment for breast cancer. We are of Ashkenazi Jewish origin, but we don't carrya BRCA gene. It's pretty obvious there is a sort of gene mutation in our family, but they have not been able to identify it yet”.
Jill says she was a “little terrified” when she first decided to get genetic testing.“You do the ostrich thing”, she says, “you are Ashkenazi Jewish origin, but you don’t want to go there because of the fear. I buried my head, but when you become aware of Pink Hope, the fear is lessened”.
Genetic testing is continually developing, and Jill hopes they will identify their gene in the future. “About a year ago the hospital contacted me to ask if they could redo the genetic testing on my blood sample. I was really impressed. But they still can’t find the gene”, Jill says. However, Jill feels empowered by the thought that they might detectit one day: “Science is advancing all the time. When you know what you’re dealing with it changes the whole process and perception of what you do and how you manage your risk going forward”.
Until then, Jill and Kirsty manage living with an unknown genetic variation with constant vigilance and by keeping up-to-date with the latest developments.They’ve both accessed information through Pink Hope’s educational resources and Information and Support Days.“While breast cancer has been part of our life and almost normalised, knowledge is power to me. I’m a very rational person, and I want to get the latest facts and information”, says Kirsty.
Kirsty also feels that should her risk of breast cancer become the reality of a diagnosis, she will be empowered and informed: “The beauty of having Pink Hope is that if that happens, I will know how to navigate the system and be informed and ask the right questions. I remember when we first sat down with doctors and specialists, you're so overwhelmed and you don't know what to ask. But I would feel a bit more empowered going into those conversations or those meetings now”.
The connections they’ve made in the Pink Hope community are also a big part of how they live with their increased risk and, for Jill, life after diagnosis.
“Those that have gone through it know the bewilderment, the fears, this absolute chaotic brain work that goes on with an initial breast cancer diagnosis. But on the other side, you get drawn into this world of people that have gone through the same thing, of people that support, that understand. And that's Pink Hope. Then you suddenly think, ‘Wow, I've been drawn into this very warm, comforting, supportive world that I didn't know before’”, says Jill.
“Especially when you’re all going through the same stuff. We are all living with the possibility of another diagnosis, or we worry for our children. And the people within the breast cancer community, they get you. You know they talk in your language,and the value of this is that it carries you. It’s immeasurable”,she adds.“That makes me feel better because I’m not alone in thinking like that”.
Kirsty says,“ not to be cliche, but when I found Pink Hope it was like I’d I found a community that understands me” and adds“I think the other thing that is so amazing is that you see from the community and what you learn, that there is life after a breast cancer diagnosis. It's something to live with and manage it. That's what, I think, can be good”.
While their genetic variant is unknown, Jill and Kirsty feel they are lucky that they know they have an increased hereditary risk of breast cancer, so that they can monitor their health closely, and get support from organisations like Pink Hope. And that they can help to support others in the Ashkenazi Jewish community too.
Jill says: “If you are of Ashkenazi Jewish origin, or have the slightest concern, or have a cancer history in your family, there’s someone that can hold your hand. You are not alone”.