Help get Life-saving Treatment for Julie

My name is Julie, I’m 37-year’s old and I am desperately in need of funds to pay for life-saving treatment which isn’t paid for on the NHS!

I was diagnosed with an aggressive form of breast cancer in September 2020 which is BRCA1 positive, triple negative breast cancer. One month later in October it was found to have spread out of the breast, making the disease stage 4, which I was told this will reduce my life dramatically. Hearing this unimaginable news completely floored me 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!

I’m usually a very private person but in a bid to help others I shared my story publicly in October 2020. I completed a 300km charity cycle around Northern Ireland to the 5 Breast cancer centres, raising awareness and £10,000 for cancer charities. Unfortunately, now I need to share my story again but this time to try to raise funds to obtain life-saving treatment for myself.

Since my diagnoses, 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, which I had 3 weeks ago. The chemo seemed to have worked well initially however, after surgery it was found that more cancer had started to grow again in the breast tissue.

Up until this point I have been researching alternative options, seeking out the best treatments and paying for second opinions to try and prolong my life and keep the cancer at bay for hopefully years to come.

On hearing news that more invasive cancer in my breast was found I’ve sought guidance from a specialist consultant in London. He advised that due to BRCA-positive triple negative breast cancer having very limited treatment options, that I need to urgently find a way to self fund a drug which has been having promising results in clinical trails for my cancer subtype. Unfortunately, this drug isn’t yet licensed or paid for on the NHS for BRCA postive triple negative breast cancer and it is also extremely expensive. As far as I'm aware you can get this medication on the NHS for Ovarian cancer but not breast.

Triple-negative breast cancer is considered one of the most aggressive cancer sub-types because it grows quickly, is more likely to have spread at the time it's found and is more likely to come back after treatment than other types of breast cancer. There also aren’t any targeted treatments for triple negative like there are with other breast cancer subtypes. This means that any drug that has potential to help with the disease is like a lifeline.

I have found it extremely hard to make this page and ask for help, but with encouragement from friends and family I have swallowed my pride and the fear of putting myself out there publicly again. I am going public in the hope to gain this much-needed lifeline, while also continuing to raise further awareness of the disease.

So I am asking for kindness and support from friends and strangers alike, to help make this become a reality, being able to fund this promising new drug to prolong my life.

This whole cancer journey has been a roller-coaster of emotions. Some days are tougher than others but I am not giving up, not when there are still other options to investigate. The only downside is it takes so much funding to explore these potentially life-saving treatments. My doctor described my current situation with treatment as being in “uncharted waters”. It has definitely been a choppy ride so far, but I’ve got my sea legs ready and I’m hopeful that it all will be worth it in the end.

Background Info

At 16 years old, I had a hereditary gene test done and tested positive for being a BRCA1 mutant gene carrier (breast cancer gene) due to a family history of breast cancer, an aunt had unfortunately died from it and my mum has survived two diagnoses. So I’ve known for a while that I was in the high-risk group for breast and ovarian cancer. I had been doing yearly MRI screening and check-ups with the hope of having a family before having preventative surgery to reduce my risk. Unfortunately, cancer had other plans and got to me first.

I found a lump late August 2020, which just seemed to appear from nowhere. Three weeks later I was at Antrim Area Hospital for investigatory tests. In one morning I had an MRI, Ultrasound, 2 Mammograms and 5 breast biopsy samples taken. I can’t fault how thorough and lovely all the hospital staff were that day.

I wasn’t expecting for the lump to be anything sinister, I even squeezed in a 6am gym class that morning before heading to the hospital. Though I quickly realised it wasn’t good news when the doctor told me he was really worried with what they had seen before diagnosing me with triple negative 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 incomprehensible. Though with a help of a lot of very kind people, I am determined to outlive any statistics.

If anything comes from this page, at the very least 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 don’t hesitate to get checked out immediately!

If you can donate, no matter how small, every penny is so appreciated.

My friends and I will be coming up with various fundraising ideas and events etc, so please keep a look out for those too.

Thank you so much for taking your time to read my story!

Hope always,

Julie xx

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Julie Lillis 
Belfast, UK
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