My name is Melissa and this is my story.
I am aged 39, and I am a BRCA 1 carrier with my gene mutation confirmed in May 2015. I have had preventative surgeries for breast and ovarian cancers over the last 12 months.
My first memory of the ‘C word’ was as a child. In 1987 at age 9, I lost my beautiful 37 year old mother, Christine, to breast cancer. This was her second battle fighting the fight, diagnosed when prepping for reconstruction surgery from her first mastectomy and breast cancer battle.
This cancer gene is/was so strong in mum’s side of the family. Research from genetic counselling determined me a high risk carrier of the faulty gene.
My mother’s mother and her grandmother passed from breast cancer, both under the ages of 42. Mum was 1 of 8 children. There were 5 boys, 3 girls (my mum was a twin). Both sisters were proactive and undertook trials and studies under a professor at John Hunter Hospital back in the late 80’s. They both had mastectomies upon mum’s second diagnosis. Mum’s twin had double mastectomy and her other sister had all breast tissue removed. Although sister has since passed due to non cancer circumstances, her twin is still alive, a carrier of the BRCA1 gene but has lost her daughter who was also a BRCA1 carrier to breast cancer a few years back now aged 41.
My only sibling and older sister Jodie passed away in 1999, at the young age of 24 to cervical cancer.
My journey started with a visit to the GP with what I thought may have been an ingrown, infected hair on my right breast. This visit was my first visit to a new GP, after making a sea change and relocating from the north west to the coast, so a thorough check and lengthy discussion regarding my family history was held with the doctor. All checked out ok with my initial concern but my doctor strongly recommended I have breast screening including an ultrasound and mammogram. I was given a referral and made appointments with the Breast Clinic. So off I went for these checks and ended up having four biopsies due to the scan results. Luckily and thankfully the pathology returned benign results for cancer but I was strongly encouraged to seek genetic counselling with Hunter Genetics. Again, off I went with a referral and notepad in hand and met with an amazing Genetic Counsellor who was professional, approachable, empathetic and comforting and thorough with advice, statistics and the family tree findings we unveiled were confronting. A simple blood test and a few weeks wait for results and sure enough the BRCA1 gene mutation was identified. It was no surprise to me that it returned a positive result and it was a no brainier for me to quickly request referrals to surgeons for risk reducing surgeries for a double mastectomy and hysterectomy.
I vividly remember chemo treatment visits with my mother and knew immediately from the get go that the risk reducing surgeries would be an easier task to undertake then to ever run the risk of a future diagnosis of the big C and chemo/radiation treatments. In my head it was a matter of when a positive finding would be identified as the odds were stacked against me genetically.
The Genetic Counsellor organised screening which was every six months, MRI and then mammogram and ultrasounds. This was my proactive screening plan until surgery via the public system was available to me and I was happy and confident with this plan. I met with the amazing breast specialists and surgeons and decided to proceed with a DIEP surgery for mastectomy and reconstruction and hysterectomy and ovaries to be removed. I was fierce and determined to not let this disease rob my three boys of a life without their mother bringing them up and living life to the fullest.
An appointment with a Gynaecologist was scheduled and an MRI was booked although I just had screens done in May 2015. I had an MRI June 1, 2015 coincidently my mum’s anniversary day of her passing 28 years prior, so I was silently emotional and nervous. I remember sitting in the change room having the dye injection and sending a silent prayer to mum while waiting for the scan to commence. It felt like the longest moment of the day. All done and changed back into my clothing and I was advised that the results would be sent back within two weeks to breast specialist, GP and Genetic Counsellor.
So off I went with life as usual, work, kids, schools, sports. A few days later I had missed calls from my breast specialist, honestly at first the missed SMS/call I thought nothing of it, as it was too soon for the results to be in. After missing multiple calls and a game of phone tag over a span of two days I ended up with an immediate appointment received via email with the breast surgeon to review the results of the MRI. Finally the breast surgeon and I were able to speak before the appointment date and she advised me of a highly suspicious finding from the MRI and told me my planned risk reducing double mastectomy surgery would be fast tracked for immediate surgery to remove the lump finding and lymph-node/sentinel node removal to ensure the best outcome.
This news rocked my world and anxiety set in immediately but I ran and held strength with “highly suspicious finding” of breast cancer and not a confirmed diagnosis of breast cancer. Don’t get me wrong I was a blubbering mess when I hung up the phone. I was at work on my break when I had the call and I managed to pull myself together and finish the day, although my head was everywhere.
When I met with my breast surgeon regarding the MRI results I was advised that this lump was small but not detected on my May scans. Given that my risk is extremely high my best option was to have immediate surgery but due to the urgency I was unable to proceed with my planned DIEP but given the options of immediate implant/expander reconstruction would be available pending the outcome of the lump findings. So we had three reconstruction scenarios planned for the surgery and I was confident that my breast surgeon would look after me. I didn’t mind what the reconstruction was I just wanted to survive.
Surgery was performed three weeks later in the public system my head went everywhere during this wait period. I googled everything possible, blogged, researched and found much comfort and support in Pink Hope and local services and support groups, having access to women in the same/similar circumstances, drawing strength from survivors and those fighting the fight.
My surgery was a lengthy (five hours under), two lymph nodes removed and all breast tissue and nipples removed. I was able to have a reconstruction straight to implant. My recovery was surprisingly good, pain was minimal and I was well looked after by amazing staff and received enormous support from family and friends. My pathology took a week to come back and thankfully all findings were benign and no further treatment was required.
I am currently recovering from a hysterectomy and removal of ovaries which I had on the 1st of July and today started taking HRT due to surgical menopause.
It has been a massive year for me physically and emotionally but I do have great support and draw strength from my family.
I know I have done all I can to remove myself from such a high risk disease.
This journey has opened up genetic testing to other family members and to date no more carriers of the mutation have been identified.