Breast Cancer is not about pink tshirts & tutus

Hello, my story is slightly uncommon on a number of levels. It is a breast cancer story however, but one that I hope can make a difference to the lives of those in similar situations. I have the Breast and Ovarian Cancer Genetic Mutation i.e. BRCA2 gene this means that women with this gene have a 70% chance of getting breast cancer in their lifetime and a 15% chance of getting ovarian cancer. Unfortunately I only found out I had this mutation after I had been diagnosed with cancer and finished my initial treatment. I was diagnosed with bilateral breast cancer (cancer in both breasts) at the age of 52. Even though my mother died of breast cancer aged 63, I inherited the gene from my father. I had dense breasts and from my early 30’s had numerous cysts which made me have regular testing with mammograms and ultrasounds and I had a number of cysts aspirated when they became large and uncomfortable. During my 40’s I was having screening every 2 years and towards the end of my 40’s every year. I started feeling really awful when I was around 47 I felt exhausted and fluey constantly and my GP said it was depression and then 2 years later menopause. I was still going for regular scans. When I was 51 I felt a large lump in my right breast, I had it checked and the radiologist said it was change in breast mass due to menopause. 6 months later I had it retested with the same result, this time they called me in for a biopsy but instead of performing a biopsy on the right breast they found a lump in my left that they tested and discovered cancer. I opted for a bilateral mastectomy which took a lot of negotiation with my surgeon because the cancer they had found in my left breast was only 6mm. A week after my mastectomy my surgeon told me the pathologist had found an 85mm cancer tumour in my right breast. This tumour was the one the radiologists had insisted was change in breast mass due to menopause. No doctor had sent me for an MRI which might have identified this cancer sooner. This tumour had been growing inside me for a number of years. From there I underwent the usual breast cancer chemotherapy treatment for someone with my cancer type oestrogen and progesterone positive and HER2- I then had radiation treatment after which I found out I carried the BRCA2 gene. I had a total hysterectomy and 6 weeks after that was diagnosed with metastasis in my spine. I immediately had radiation to my spine and commenced standard endocrine treatment. What they don’t tell you is that 30-40% of women with metastatic breast cancer also carry the P13K mutation this prevents standard treatment i.e. all my previous chemo and endocrine treatment from working due to the way the cells are formed. This was discovered after 3 years. I was then placed on a trial and got the control which was already on PBS and it worked for around 6 months, after that the cancer was spreading all through my bones. My oncologist has tried most of the PBS treatment which is very limited for they type of breast cancer but now we are at a stale mate. The best option for me is the drug Olaparib which is on the PBS for those who have ovarian cancer but for those with the BRCA2 gene and metastatic breast cancer the cost is $30,000. My oncologist has written to the drug company to ask for compassionate means to access the drug and they have declined. It seems absurd that the drug is already on the PBS for ovarian cancer. There is no assurance that the drug will work, however it is the only treatment available in Australia at this time that might extend my life and the life of others with my cancer type. By me publishing this, raising awareness and writing to the drug company I am hoping that it will soon be able to be accessed by the up to 40% of people with metastatic breast cancer who have the P13K mutation as well as those with the BRCA mutations.

I am only 1 in nearly 8 billion on the planet and am completely expendable, however, if I can raise awareness by sharing my story and doing everything I can to save those who love me from an earlier grief than necessary I will! My doctor suggested I put this page up, it will make a difference, research always does as does education. Any donation will be appreciated and I will give you updates