Fighting cancer and fighting the system

My story should’ve been different. There is a strong family history of breast cancer in my family, the most recent case was my mum at age 53. My dad‘s mum died from it, along with 2 of her sisters. My dad’s cousin had it as well as her daughter.

My sisters were provided with regular screening with a breast surgeon when my mum was diagnosed with breast cancer but because I was only 26 I wasn’t included in the screening. I found a lump during my first pregnancy at 28 and saw a breast surgeon who told me it was hormonal.

I had numerous breast lumps over the years that were always deemed hormonal but with my family history I went to see a GP to see if I could be tested for the BRCA gene. I was told I couldn’t because I needed a current family member to have it and thankfully my mum was cancer free. I was prepared to pay the exorbitant cost of the test but couldn’t even get referred to a genetic counsellor.

Fast forward 8 years at 43 and I felt another lump. I‘d had my first mammogram 6 months earlier which was clear but went to the GP who did a breast check and told me it was nothing. I insisted on an ultrasound which the GP begrudgingly ordered along with another mammogram. The mammogram was clear but the ultrasound on the same day showed a suspicious lump. The fine needle biopsy confirmed breast cancer. The GP broke the news by saying “well that was a surprise wasn’t it?” She couldn’t even say the words “You have cancer.” I had to actually ask her “so does that mean it’s cancer?”. Sufficed to say I haven’t stepped back in her office.

I went through the public health system where I have worked for over 25 years and was told I had to wait 3 weeks to see a breast surgeon. That is 3 weeks of absolute hell not knowing what your future holds so I paid privately to see the same surgeon and got in 1 week earlier. The surgeon encouraged me to have a lumpectomy. I said I wanted a double mastectomy. He said “do you how many women walk in here and say that when they don’t actually need it?” He told me it wasn’t necessary and I told him with my family history that I didn’t want to take any more risks. He also begrudgingly agreed. Post mastectomy I asked for the BRCA test and he told me only 5-10% of breast cancers were genetic. Again I pushed and again he begrudgingly agreed.

The test came back BRCA 2 positive. Thankfully I had already had a double mastectomy and chemo but my risk wasn’t over. With the new diagnosis my amazing oncologist was happy to refer me to a gynaecologist to discuss having my ovaries, fallopian tubes, uterus and cervix removed. This doctor was also great and immediately agreed it was the best option for me.

I am now nearly 3 years cancer free. I’ve had all of the preventative surgeries I can have knowing my cancer risk with the BRCA 2 gene. My dad tested positive for the gene as suspected all along and subsequently two of my cousins have now tested positive. One has just had a preventive double mastectomy. The other one was going to do the same but when she had her first mammogram at 36 it detected cancer. She has just had a double mastectomy and chemo and is about to start radiotherapy.

This is where I get angry. If I was allowed to have the BRCA 2 test right in the beginning, my cancer and my cousin’s cancer may very well have been prevented. Also, if I hadn’t been so insistant with the GP to have the ultrasound I may have ended up in a much worse predicament. So I ask why did I have to fight for tests that should be easily accessible and fight for adequate treatment that I’m entitled to? Working in the health system I knew to ask about these things, someone without my knowledge may not have known what to ask. What would‘ve happened to them?