Our lovely BRCA Pal Naomi has written a blog about her BRCA Journey. From her mother’s Ovarian Cancer diagnosis, to today – where she is facing her decisions about cancer prevention. Naomi encourages you all to talk to your Doc, after all, knowledge is power.
My cancer journey started in February 2008 when my Mum was diagnosed with ovarian cancer. I am not embarrassed to admit that I was clueless about this type of cancer. I can remember my Mum walking down the drive saying, “I’m going to have to have some major surgery”, before she actually broke the news of her diagnosis to me, one of many ways I think she tried to protect us through the whole thing.
In a matter of weeks, we were thrust into this alien world of surgery, recovery, treatment, anti-sickness drugs and injections, chronic fatigue, and the inevitable hair loss. It was like living in a nightmare and it wasn’t even happening to me. My Mum struggled hugely with chemotherapy at first, not having known what to expect, how her body would react, but slowly she understood the pattern, the rise and fall of the side effects, the good days, and the bad days.
We then got nearly two clear years before the cancer returned, which we had all been warned about. Ovarian cancer can be managed like a chronic illness we were told, and this was absolutely the case for the first three or four years. However, the gaps between treatment were shrinking, the cancer coming back sooner, and the options running out.
By Autumn 2013 my Mum was going downhill, she spent time in hospital before being moved to a hospice just before Christmas. She spent Christmas Day at home with us, even managing to complain about some of the presents she received, eat quite a few roast potatoes, and give our family some precious and unforgettable memories.
My Mum died in the middle of January 2014, at the age of 64, 5 years after diagnosis.
Before my Mum died, they found that she was a BRCA 2 alteration carrier. My Mum is of Ashkenazi (eastern European) Jewish heritage, and sadly the prevalence of BRCA alterations is higher in this population. In 2015, I was also tested and told I am a BRCA 2 alteration carrier, giving me an 80% lifetime risk of breast cancer, and 20% lifetime risk of ovarian cancer. From the age of 30 I have had an annual MRI breast scan to detect any early signs of breast cancer, and I have also had many conversations about my options for risk reducing surgery, for my breasts and ovaries.
I am beyond grateful to live my life with this knowledge, at the age that I am, and I only wish this had been the case for my Mum all those years ago. Knowledge is power, and it’s this sentiment that I think of when trying to reconcile the cards our family have been dealt. When I first found out I was a BRCA 2 alteration carrier, I spoke with a wonderful consultant who told me to have my family first and then think about my risk reducing options. I have duly done that, had two beautiful girls, and am now thinking about what I need to do to ensure I am around as their Mummy for as long as possible.
When I really think about surgery, and play it forward in my mind, I can’t deny it scares me, but not as much as the thought of being in the dark about this or taking no action. The way I look at it, if I can show the same strength that my Mum did in surviving this disease for as long as she did, by removing the things that could cause it, I will make myself and my family proud. I know when the time comes, I won’t be so matter of fact about it, I’ll grieve the loss of parts of my body and be worried about what I will look like, how I will feel. I know I will need a support network; I know I will need to feel my Mum guiding me, but I’m stronger than I think I am, we all are.
I am in a different position to many women, however, who don’t face these decisions after having children. No one can silence that ticking clock when you have an inherited risk, and I live with worry each year that goes by, but I have zero regrets about having my children. Now it’s time for me to focus on getting peace of mind.
For those who suspect they might be high-risk, if there is a family history of breast or ovarian cancer, if you have a relative who is a BRCA 1 or 2 alteration carrier, then I can only encourage you, gently, and with your best interests in mind, to ask your doctor about getting tested. Equip yourself with knowledge early, and fundamentally, choices.
Thank you Naomi for sharing with us, please like, share and comment below. You can find Naomi on Instagram here @eatsleepgrieverepeat
