My name is Beck, I’m 40 years old with a strong family history of several types of cancer. My grandmother and younger sister were diagnosed with breast cancer, and both underwent treatment. Knowing I had an increased risk, I committed to yearly screening, including a mammogram, ultrasound and MRI.
My sister was diagnosed at 31 and only tested for BRCA gene mutation, which came up negative. Four years after the initial testing, she was contacted by the geneticist, who said that her sample had been retested for the PALB2 mutation, and came back positive. Because there is a considerable history of cancer on my mums’ side, we felt like this was the missing link to help us gain some clarity around the answers we’ve been searching for.
This information prompted mum, me, and another younger sister to test for the PALB2 gene, which also came back positive for all of us. Knowing these results allowed us to have control over where to go from there and make a plan to reduce any additional risks. I have been able to control and reduce my risk of breast cancer from the 80% category for a lifetime risk down to virtually 0% by opting for a prophylactic bilateral mastectomy and DIEP reconstruction.
When my family and I chose to test our genetics, we opened more of a conversation to extended family and friends. It’s been significant for mum’s side. Those who tested for BRCA gene mutations but knew nothing about PALB2 could now opt for that too. My biggest obstacle through this experience was explaining to people what I had, what it meant, and why I went down the path I did to take control of my health. Speaking more openly about genetic testing can assist others in understanding their risk and what to do if they have any mutations.
“It can happen to anybody; you just need to be really vigilant and have the conversation.”
In my circle of friends, I’ve been able to push them towards taking that next step and getting mammograms or performing self-checks. I understand that it can be scary for some, and not everyone wants to know the answers. The anxiety and fears of “what-if” feel worse than being oblivious to it, but these conversations need to be happening.
The most important lesson I’ve learned through this experience is that you’re stronger than you think you are. You’ve got more support than you could imagine, and with so many others out there like you— you’re not alone. When I first found out about the PALB2 mutation, the only information I could find was an overwhelming number of articles with medical jargon and the Pink Hope website.
Looking further into what Pink Hope had to offer, it was the first time I truly felt like I wasn’t alone in this journey. Through them, I connected early on with women who had the same mutation and similar experiences. Having that support network of women who understood what I was going through was extremely important.
Even though we all had different stories, and some with more complex cases, it made me feel more comfortable knowing I had this community to fall back on when things felt unbearable. We were able to share information about procedures and clarify any new developments regarding the PALB2 gene. It’s good to have as much information as possible to help support your decisions and be there for others to give advice, feedback or just someone to talk to.
Going through this experience has made me realise how much I’ve resonated with what “Purpose” means. I’ve always been tough and strong and had to be ever since my older sister passed away from brain cancer when I was 21. I had to step up and be strong for my younger siblings and find ways to adapt to what life would throw at us next. I never gave up and found ways to deal with my situation when things felt like they were falling apart.
After seeing my two sisters go through treatment, I knew I didn’t want that for myself. I had the choice in this aspect of my life and took control where I could. My Message of Hope? Information is crucial and finding out your family has a gene mutation isn’t a life sentence. With this information, you’re able to research and collaborate with experts to understand your risk assessment and what you can do next. Knowledge is powerful for your breast cancer journey. To give yourself the best outcome, investigate as much as you’re comfortable with and ask questions if you don’t understand. Your future could look so much brighter if you give yourself the chance of early detection.
