My BRCA Experience.
“Cancer can be linked to genetics”, I first heard this statement in 2013 from a family friend visiting my mother in hospital. I didn’t think much of it then, as naive as I may sound, I thought my mother’s cancer diagnosis was fate gone wrong. Life went on, I raised awareness of ovarian cancer at any given opportunity from running marathons to speaking to local MPs, through it all I barely thought of ovarian cancer’s link with genetics or knew anything about the BRCA gene until 2017.
5 years after my late mother’s ovarian cancer diagnosis, in August 2017, I received a phone call that left my heart in pieces, my maternal grandmother had been diagnosed with the same disease. It’s at this point the alarm bells went off and I had to face the bitter truth “ovarian cancer runs in my maternal family”, I shared how my grandma’s fight with cancer is currently saving my life here.
Having lived to see my mother live through ovarian cancer, now my grandmother, and knowing cancers such as ovarian can be influenced by genetics and run in families, a part of me was scared. I was scared what-if one day I too may face the same fate and even more scared at the thought that my kids may one day live to experience the trauma of watching a loved one battle cancer. The thought of it all was unbearable and after months of running away from the truth and a lot of what-ifs, in May 2018 I finally found the courage to speak to my GP about my family’s cancer history, not forgetting two of my aunts that played a role in this decision and were my support system throughout this journey.
“We need to get you BRCA tested” these words marked the start of my genetics testing journey, with my GP referring me to the Clinical Genetics team at City Hospital.
2018 was a defining year, I was turning 25, a number of life changing events took place and I felt I had the responsibility to find out the cause of ovarian cancer in my family, for my peace of mind. I was ready to put the wheels in motion and told myself, regardless of what my BRCA status turns out to be, I know I’ll be able to go to sleep at night knowing my future self will thank me.
Fast forward to June 2018, phase 1 of my test journey was a transvaginal scan, a pelvic ultrasound used to examine the female reproductive, in this case the scan was used to check the condition of my ovaries and any abnormalities. It’s during this time I learnt I’m able to drink 2Litres of water and hold my bladder for as long as I possibly could (you need a full bladder when going for an ultrasound and are not allowed to empty it until the scan is done), to my friends in the medical field, here is a business idea: ultrasounds that don’t require the patient to drink gallons of water and save us from the embarrassing dance moves! Phase 1 ended on a positive note, no abnormalities detected and overall healthy ovaries. Now I had to patiently wait for my clinical genetics appointment letter to come through, I kid you not but this felt like waiting for Christmas to come around.
"I know I will be able to go to sleep at night knowing that my future self will thank me"
Due to my family history I was eligible to get the genetics test done under the NHS, whilst this came with longer appointment waiting times, this is something I will forever be grateful for as it can cost a fortune to get the test done privately. October 2018 after returning from seeing my grandmother in Tanzania, I had my first appointment with the genetics counsellor to discuss the test in-depth; we went through my family tree, to what the BRCA gene mutation is and what would happen if I tested positive or negative. It was a productive appointment and I left the hospital assured that regardless of what my test results turn out to be, this is a decision I won’t live to regret.
I must say, the genetics test journey is not for the faint-hearted. It took me a while to come to terms with my family’s cancer history and a little longer to decide if I was ready to get this test done and prepared for the life-changing results that come with it. Being in my mid-20’s, a part of me thought “girl, you don’t need to worry you are still young,live and enjoy life” and the other part thought “knowing the truth is better than living with the fear of the unknown”, however this changed after my I lost my grandma. In the space of 3 weeks from the first appointment to the second appointment with the genetics counsellor, my grandma lost her battle with ovarian cancer, this was and will always be one of life’s biggest blow, a part of me thought she was immortal and was going to defy the odds and beat ovarian cancer. It’s at this point I told myself I’m 110% doing this for me and the future generation.
30th November 2018, the day began with me waking up around 5a.m not because I’m an early bird but because I have thin veins and often times nurses or doctors have trouble with finding my veins when they need to take some blood, I had to wake-up at this crazy hour to drink as much water as I possibly could, to make sure they could find a vein the first time cause I was not ready to get poked with needles more than once on a Friday morning. The day I had long been waiting for was finally here, this was the last huddle to finding out my BRCA status. As brave as I sound or may have looked that day, I was scared and not sure what to think, it was a Michael Jackson’s THIS IS IT moment when the nurse called out my name and the first thing I saw when I walked in her room was 4 blood bottles and needles. This is the moment I told myself, “GIFT ANGELA HAMISI I’m proud of you, at 25 you made a tough life decision not everyone would have the guts to make. Your future-self with thank you”.
I had to wait for about 8-10 weeks to get my test results, in between that time I tried as much as I possibly could to not think about results day or what my results will be. I found various ways to distract myself from the thought of results day and it worked until w/c 21st January 2019 when it dawned on me, results day was about 2 weeks away and I could no longer distract myself from thinking about it. I went from care-free to thinking hard, I remember one day as I was walking back home from work, I thought of holding back from getting my results until my 30th birthday (not sure why I picked 30) to I don’t want to know what my results are in general. I wasn’t sure whether I wanted to go to my results appointment alone or take someone with me, in short I just wanted the day to come and go in the speed of light.
“Knowing that I have been able to take a major step towards preventing future cases of ovarian cancer in my family gives me peace of mind and I wouldn’t trade it for anything”
08th February 2019 - RESULTS DAY! This day was filled with a lot of emotions, emotions words can’t even explain. I had friend come with me, shout-out to Lynette for being there that day. Words can’t explain the tears of joy and mixed emotions that came after hearing my genetics counsellor say “your results are negative”, the relief that came with knowing this long emotional journey had now come to an end, I was relieved to know that I will not have to live in the fear of the unknown. I can’t find the right words to explain what this test or results mean to me but to be told I tested negative despite the odds being against me due to my family history is something I will forever live to thank God for.
Whilst, not having a genetic mutation significantly lowers my risk of developing ovarian cancer, it doesn’t eliminate the whole risk. However given what I know now and the screening plan my genetics counsellor has put in place for me, I’m in a better position to manage this risk by making necessary lifestyle changes, paying extra attention to my body, being symptoms aware and I now know the importance of going for routine gynaecological checks. My BRCA experience has definitely shaped the woman I am today, and knowing that I have been able to take a major step towards preventing future cases of ovarian cancer in my family gives me peace of mind and I wouldn’t trade it for anything.
For anyone who like me comes from a family with history of ovarian or breast cancer and is undecided on whether to go or not to go for the genetics test, I would encourage you to go. Knowledge is power and knowing your BRCA status can help you take the right steps to prevent cancer before it happens.
To understand and find out if your family history puts you at risk of ovarian or breast cancer, use the Hereditary Cancer Tool provided by Ovarian Cancer Action.
If you are in the U.K and have had more than one case of ovarian or breast cancer in your family, speak to your GP to find out more about the genetics test. In Tanzania, Lancet Labs offer the genetics test services.