“My world turned upside down and I genuinely thought I would not see my children finish school and university.”
In January 2019, Yulia Baynham was diagnosed with breast cancer after screening as part of her annual employer medical. During treatment she was offered genetic testing, resulting in testing positive for a PALB2 alteration. We caught up with Yulia to find out more and how her genetics played a role in her diagnosis.
I had 5 months of chemo, a double mastectomy with immediate reconstruction, 25 sessions of radiotherapy and 12 months later, I had my ovaries and tubes out. During chemo I had genetic testing which showed I had a PALB2 alteration. PALB2 is a high-risk breast cancer gene that no one really knew much about as testing for it only started in 2016.
Naturally, Yulia wanted to learn everything about the gene – what it meant for her and especially the impact on her family:
I connected with top PALB2 researchers, including Professor Marc Tischkowitz, who I now collaborate with running annual global PALB2 webinars for gene carriers and their families.
Sadly, the UK has no national service for those with this alteration, which we, as patient advocates, are now doing something about. We are very active, talking to charities like yourself, and I am delighted to work with Donna and Jade from #Notjustbrca and other advocates from BRCA initiatives.
She continues:
I read every source available and also joined the Facebook group ‘PALB2 Warriors’ (it grew to 3000 people now from 300 when I joined). There I ran multiple polls to understand surgery choices, risk management in different countries and simply exchange knowledge. This amazing and supportive group helps me to form agendas and content for our annual webinars.
Yulia now leads PALB2 patient education not just in the UK, but also globally, including presenting and speaking at events and co-producing an information booklet. She is also a senior contributor to multiple cancer research studies.
How has Yulia’s diagnosis affected her life?
It’s evident her focus and passion on early detection and the prevention of breast cancer clearly knows no bounds, but we wondered how her breast cancer diagnosis affected her relationships:
By way of coping with diagnosis and treatment I sought support from my friends, family and colleagues. I ran a Whatsapp chat for them (over 50 friends from all around the world) to update everyone at once with progress. I had 32 people coming to my 16 chemos and half were from my office. I had a waitlist and am honoured to have such wonderful and supportive friends.
Some people got very scared or didn’t know what to say and how to help. My husband, my two teenage children and my mother were all impacted in different ways, and this is a really difficult situation, particularly in dealing with continuous anxiety. If you are ill, the whole family is with you too. I became more protective of my time, put my health and well-being first, and became choosier how and who I spent my time with (family being an absolute priority).
We asked Yulia what a breast cancer free future meant to her:
A breast cancer free future means a worry-free life for me and my family.
Life is tough but we are resilient and resourceful, and don’t ever forget that YOU are the most important person in your life. Don’t ever suffer alone – there is help out there.
And the more we talk about hereditary cancer and its impact, the better!
Thanks so much to Yulia for sharing her story with us today.
For more information and support around PALB2, take a look on our PALB2 information page.
Read about the work Prevent Breast Cancer researchers are carrying out to get ahead of breast cancer.
About Prevent Breast Cancer
Prevent Breast Cancer is the only UK charity entirely dedicated to the prediction and prevention of breast cancer – we’re committed to freeing the world from the disease altogether. Unlike many cancer charities, we’re focused on preventing, rather than curing. Promoting early diagnosis, screening and lifestyle changes, we believe we can stop the problem before it starts. And being situated at the only breast cancer prevention centre in the UK, we’re right at the front-line in the fight against the disease. Join us today and help us create a future free from breast cancer. If you have any questions or concerns, email us today.