Julie Lillis, (38), a TV production manager from Whiteabbey, was diagnosed with breast cancer in September 2020 after finding a lump.
The day before cycling 300km for local cancer charities in October, Julie was given the overwhelming news that the cancer had spread and was incurable. But in indomitable spirit, Julie stayed positive and completed the cycle, generously giving £5K to Cancer Focus Northern Ireland to help fund a unique new support group for younger women with breast cancer and the charity’s research into the mutant BRCA gene at Queen’s University Belfast.
Because I was tested when I was 16 and found out I have the inherited BRCA 1 mutant gene (breast cancer gene), I have been getting MRI scans every year from the age of 23. When I felt a lump at the end of August last year, I didn’t think it would be anything sinister, I even squeezed in a 6am gym class that morning before heading to the hospital! I’d had a scan the year before and I didn’t think cancer would grow that quickly.
I quickly realised it wasn’t good news when the doctor told me he was really worried with what they had seen. He then diagnosed me with triple negative breast cancer, a very aggressive type of breast cancer. From that day onwards my world completely flipped up-side-down. Being told my life expectancy will be greatly reduced was distressing and simply incomprehensible.
My mum said she’d never seen someone’s colour drain from their face so quickly. But I scraped myself back up, remained hopeful and determined to do what I could to try and shrink the cancer and prolong my life. I am not ready to leave this world yet!
My mum has survived cancer twice. My sister, who also has the gene, had a double mastectomy and her ovaries removed. I chose to go down the preventative annual MRI route and wait until I had children before having surgery to reduce my risk, but cancer had other plans and beat me to it. The past year going through treatment has been tough and a roller-coaster of emotions, but I am taking it one day at a time. You have to just keep picking yourself back up and carrying on after the down days.
A support group for younger women with breast cancer is exactly what is needed in Northern Ireland.
Although I have had great support from my family, I feel a peer support group for younger women with breast cancer would be absolutely invaluable. During lockdown I found myself on support group video calls with other women where I was by far the youngest there. Although we all had cancer, I felt quite isolated as there was no-one else my age going through the same thing and having to make the same massive life decisions such as my fertility and having children. I think a support group specifically for younger women would provide a safe space where we can openly discuss these issues and know we’re not going through it alone. That support and camaraderie means so much.
Get to know your normal
Since my diagnosis, I have gone through months of gruelling chemotherapy, managing 15 cycles in total, in a bid to shrink the cancer and keep it ‘asleep’. This was followed by a bilateral mastectomy. The chemo seemed to have worked well initially however, after surgery it was found that more cancer had started to grow again.
Now I am currently raising money to help pay for life-prolonging treatment and generously spending time helping Cancer Focus NI raise awareness of breast cancer.
I would like for more women and men to be aware of signs and symptoms, and if you notice any changes in your body to act right away. I went to the doctor as soon as I found the lump and it still wasn’t early enough to ‘catch’ it. So please, please check yourself regularly so you get to know your own normal. That way you will notice if anything has changed. And if it has, don’t hesitate to get checked out immediately.