“I Discovered I Have The BRCA 1 Gene, So Here’s What I Decided To Do”
It is October which means it is Breast Cancer Awareness month. At the end of 2020, there were 2.3 million women diagnosed with breast cancer and 685000 deaths globally. As of the end of 2020, there were 7.8 million women alive who were diagnosed with breast cancer in the past 5 years, making it the world's most prevalent cancer. This month I want to help bring awareness to a type of breast cancer I haven't heard of before my paths crossed with one of my clients, Trishal Lazarus. She attended one of my childbirth education classes and as we got around to the topic of breastfeeding, she shared a bit of her story and why she won't be able to breastfeed at all once her baby is born due to her having the BRCA 1 Gene and her path that followed since she discovered it. Here is her story.
BRCA 1 positive but I’m choosing life, you always have a choice
"This whole journey started when I was 7 years old, when my role model, my Mum was diagnosed with breast cancer at the age of 31. At the same time my maternal grandmother was undergoing her treatment in her mid-50s. At a young tender age I have been exposed to the reality of cancer. In a nutshell my maternal family has a history of 4 generations of, a genetic predisposition for breast and ovarian cancer. My mum and grandmother both tested positive for the BRCA 1 gene in 2003. It was inevitable that I would have to undergo genetic testing as well. It was all about timing…
July 2016 was the month that altered my life in a way that is unimaginable to any 24 year old. During 2016 there were many family members that were diagnosed with either breast or ovarian cancer, including a second cousin who was diagnosed with Stage 4 Breast Cancer at age of 27. This triggered the urgency to undergo the genetic testing. After receiving genetic counselling and providing a blood sample, I would find out the results after 3 weeks. Who would have thought that a simple blood test will determine the faith of my life in only a few days? I knew deep down what the result was going to be, how I would react and accept it was a different battle all together. Testing positive for the BRCA 1 gene has definitely changed my life, the way I view it and how I live it. The genetic counselor sat in front of my Dad and myself and told me that I was positive with an 87% risk of getting cancer in my lifetime. I was so determined from then on, to feed on this adrenaline rush with positive vibes and not let the anxiety of this news take over.
What exactly is the BRCA 1 gene you may ask?
The name “BRCA” is short for “Breast Cancer gene”. Everyone has BRCA 1 and BRCA 2 genes but some people’s genes do not have normal functionality which then becomes a gene mutation. These mutations can be passed from one generation to the next.
Some questions that I had to ask myself before going for the genetic blood test: Why am I testing for this? Am I prepared for the outcome? Whom do I want to share the results with? Is my family prepared for the result? What impact will the results have on MY life? Do I understand the next step should I test positive? Hence it is important to undergo counselling so these questions are addressed.
I was given two preventative measures - you can choose the option to have regular screening such as an MRI scan or Mammogram every 6 months or reducing the risk considerably by having a radical double mastectomy. Personally constant screening is more emotionally draining and extremely costly, the thought of lying in the MRI machine for 2 hours being injected with a dye that burns as it goes through your veins gives me the jitters. I couldn’t stand the chance of cancer appearing at any point in my life I therefore chose to have a prophylactic double mastectomy with immediate reconstruction in November 2018. Once the genetic results settled in and my decision was taken to have the mastectomy, I focused my time on researching the procedures, and most importantly finding the best doctors in the field - finding the best oncologist and plastic surgeon is like finding the most comfortable and fitted bra.
Pre-Operation Prep was the most fun part of it all, going shopping for button down clothes and comfy slip on night dresses. But there was a lot that I needed to plan and anticipate like ensuring that I have people to take care of me? Someone to cook and ensure I am eating healthy to speed up recovery. (Spinach and beetroot the best post op cell foods) I was extremely blessed to have my husband – 7 months after we were married - by my side post op to help me at my beck and call – I am eternally gratefully for. I am also thankful to my close family and friends that walked this emotional journey with me.
The night before the surgery I was actually pretty calm, I just repacked my hospital bag several times just in case I miss something. I ensured I ate a big meal and meditated- the most important thing for me was to get into a balanced emotional and physical state. I knew that the next day I had to eat one meal at 5-6am and that was it until the next day. So my dear husband cooked a feast the day of the op. If anyone has ever been for any scheduled procedure, you will know that it is rarely on schedule. My operation was about 3 hours delayed and in total I waited 11 hours before going into theatre. Needless to say I was relaxed and even had time to shower twice and wash my hair.
My surgery was scheduled for 2 hours, but unexpectedly took 5 hours due to complications that were not anticipated. The surgeons found fibroids and extremely dense tissue which made the surgery more difficult. A mole and enlarged nodes were discovered. This was extremely scary as these could have been cancerous. Fortunately the histology results came back negative. The positive outcome was that this confirmed that my decision for the mastectomy was a correct one. Still, the disappointment was that the size of implants that I wanted did not materialize and I had to endure two additional cuts and scars that I was not prepared for (in total 4 cuts and 2 drain incisions). The lesson is that ‘don’t have expectations going into such a procedure’ as things may not go as planned. Having the drains inserted on either side of my breasts draining all the excess blood was the worst part of this entire expedition. Every movement or turn tugged at the drain which was beyond excruciating. There was a point where I was so sick and tired of carrying these ‘bloody’ containers, I just wanted to yank them out. This thankfully was the worst 2 weeks and was so relieved when it was over. And truth be told it wasn’t even painful when they were removed.
People were right when they said that the 4 days in hospital was going to be the ‘honeymoon period’. Only when I got discharged did reality sink in, I was unable to shower for several weeks until the drains came out and my wounds healed. The only perk of this was getting my hair washed for me. The only uncomfortable thing that is hard to adjust to, even to this day, is sleeping in on my back in one position- my only tip is to get extra pillows, a pregnancy pillow is a bonus.
Road to recovery
The surgeon will always reiterate that this will be a very long road to recovery and it becomes more of a reality each day. A few weeks after surgery my nipples and scars started scabbing which wasn’t the most pleasant thing to go through. But it just showed me how quick my body adapted to change and that the new skin that developed as I was healing was just a new beginning in my life. I was also surprised when I started getting an electrocuting, shocking feeling run down my arms at night, thankfully my surgeon was on speed dial and her response was ‘think of your nerves as powerlines and as soon as you interfere with it (removing my nodes under my arms) there is no longer a smooth running line hence the shocking surge, this pain doesn’t happen to everyone and lasts different lengths of time. Another thing that takes time getting used to is the loss of feeling in your breasts and underarms but at least now I won’t have to deal with the pain of underarm waxing haha.
The few crucial things that made the first stage of recovery manageable was having a line-up of Netflix series, several books to read and pain killers… A week before the operation my family hosted a ‘boob-voyage’ party with ladies in my close circle who have either survived cancer, prevented cancer or has undergone a tough time in their life. These ladies gave me the much needed motivation and courage to overcome this. I will highly recommend turning to those close around you even if they have not been through the exact same procedure, bouncing experiences and tips is a deal breaker.
Where to from here?
It has indeed been a rollercoaster ride but I have never been happier with my decision. I know that this does not end here and I will need to constantly take extra care of my health. Due to the high risk of ovarian cancer, it was advised to have my children young (before 30) followed by a hysterectomy in my mid/late 30’s. I have been blessed with a beautiful and healthy baby boy born early 2021 and am expecting my second. I have sacrificed breast feeding but to me it was an option of breast feeding or prolonging my life. I am determined to use this as an opportunity to love myself all over again, scars and all. This can come across as scary or negative but it is how you react and deal with it that makes a difference. I choose to use this experience as a platform to live the life the way I want to live it and not let the noise around me determine my destiny. I am in control of my life and the decisions I make to enhance my quality of life.