OCA Cancer Prevention Officer Jo is our resident expert on all BRCA-related issues. She shares the pain of losing her beloved Mum to ovarian cancer and how genetic testing has enabled her to take control of her own future.
"I’d never really heard of or thought about ovarian cancer before 2003. I had no reason to, I suppose. But then it came barrelling into our lives like a freight train going full speed, when my mum was diagnosed aged 53. She had visited her GP multiple times with several of the typical symptoms, but despite battling to get a diagnosis, she was very positive.
She initially took part in a trial looking into whether chemo or surgery should be the first stage of treatment, and was allocated to the surgery group. I remember visiting her immediately after the operation to remove as much of the cancer as possible, and this was the first glimpse of my mum ill, not looking like herself at all.
She was an Assistant Headteacher at our local secondary school, and her passion was working with young people who were struggling. She kept working throughout her treatments, timing her chemo so she would feel ill at the weekends. She lost a lot of weight, lost her hair, but always, always had the same beaming smile.
She had a good period of time where she was back to herself, and cursing that she was back in her bigger jeans. I remember telling her I’d rather she be a size bigger than she wanted to be and still be with us.
Then on Christmas Eve 2005, I was chopping carrots for dinner and my dad told me the doctors said there was no longer anything they could do, that my mum had approximately six months left.
The world stopped. From then on, I have always thought of my life as “before” and “after” that moment.
Although my mum didn’t want me to change my life for her, there was no question of where I wanted to be. I left my post-graduate teacher training course and moved back home to be her carer and help out with things at home, although I still feel I didn’t do enough and could never do enough to make the situation better.
During this time we were lucky that my mum’s GP spotted that her mother passing away from breast cancer at 41 years old, alongside her own ovarian cancer diagnosis, was a red flag. We were referred to a genetic counsellor and as part of preparing for the appointment my mum was advised to research her family tree to see if anything else could be uncovered. She found that there was breast and ovarian cancer in many family members going back generations on her mother’s side. It seemed highly likely that there was something genetic at play and the genetic counsellor offered Mum a blood test. She decided to go ahead, but we were told the results would take some time. The analogy the genetic counsellor used was to imagine they were looking for one wrong digit in a whole phone book, when they’re not sure there is an error at all.
After a few months of rapid decline, my mum passed away at the end of March, with my dad, and all three of her children around her. Her dad’s birthday was the day before and I am convinced she held out until after midnight on purpose.
After she died, the school named their new building after her, and the school prom was held in her memory - decisions made by the students themselves which would’ve meant so much to her after all her years at the school.
Several months after she died, we had the results back from the genetic test showing she had carried a mutated BRCA1 gene. This explained the cancer in our family tree, why her mum had died so young from breast cancer, and also her own ovarian cancer. These mutations are hereditary and there was a 50/50 chance that each of her children had also inherited the mutation.
I went through the process of genetic counselling straight away, had my blood taken then changed my mind about the test on my way home from the hospital. I decided that at that point in my life, the results wouldn’t change anything- there would be no difference in my medical care at that age, and I didn’t want to make life decisions about settling down or getting married based on the genetic test results. I decided to wait until for a few years until an age where there would be additional screening, or if there was a decision in my life that required that knowledge before I had the test.
"All I can tell my boys is that she would have covered them with so many hugs and kisses they wouldn’t be able to breathe"Jo Stanford
That time came after my husband and I had had our first child, and we were struggling with lack of sleep and with no family around for support. We knew we wanted more children but genuinely couldn’t imagine coping with that any time soon. At this point I was 27 and knew that if I did carry the mutation, I would want to start risk-reducing surgeries in my early thirties, so I decided to have the test to help us decide whether to have another child sooner rather than later, or wait for five years or so! As it was, the results showed I did inherit the BRCA1 mutation from my mum. This gave me an 85% lifetime risk of breast cancer, and up to 60% lifetime risk of ovarian cancer.
We decided to have another child about a year later, and when he was 18 months old and I’d reached 30, I had a risk-reducing double mastectomy with reconstruction. This should have been one surgery, but unfortunately I had an infection that wouldn’t shift even after months of IV and oral antibiotics. I ended up having that implant removed and was “wonky” for 6 months as my body healed. I had two more surgeries before I was signed off. The key thing here is that my risk of breast cancer has gone down from 87% to under 5%. There will always be a risk, as no surgeon can remove every breast cell, but I have cut my risk as much as possible.
There is unfortunately no reliable screening available to try and spot ovarian cancer early, so that is a worry. I plan to have my ovaries and fallopian tubes removed around the age of 35 which is the earliest it is advised to do so due to the long-term health risks of early menopause.
Losing a parent isn’t something you ever get over. There are gaps in my life every day, moments stolen from us from little things others take for granted, to big life events. The biggest, that I feel as a physical pain every day, is that my mum didn’t get to meet my children. I have pictures of her up all over the place, and we talk about how she loved cream cakes (but never let herself eat them- which is why we ALWAYS have them on her birthday and on the day she died), what she liked doing, the music she loved. My six-year-old said to me a few months ago that he was really sad because he wishes she was here. For anyone else grieving, I might have said something about remembering the happy times or thinking of the nice things they’d done together, except they never got to do any of that. All that is left is sadness and stories.
What makes me notice our loss all the more is that she would have been here so much she’d have been getting on my nerves. They say it takes a village to raise a child and I know my mum would have been a whole village on her own. All I can tell my boys is that she would have covered them with so many hugs and kisses they wouldn’t be able to breathe. They would have been the light of her life. My mum has once been a breastfeeding counsellor, yet she never had the chance to pass on all her knowledge to me. Every day I envy the women whose mums are around to help them, or just to talk to whenever they feel like picking up the phone.
A huge moment stolen from me was having my mum at my wedding. She loved my husband, (and used to go play golf with him when I was working my summer jobs and he came to visit me), so I know she’d have been so happy at our wedding and would have taken the opportunity to be dressed up to the nines and dance the night away. I didn’t get to go dress shopping with my mum or embarrass her at my hen party. We kept a seat free for her in the ceremony with her photo on, and walking past that empty chair was so hard.
The last words my mum spoke to me were 'I’m so lucky'. While I wish with every fibre of my being that she was here, she has no idea how lucky I feel for having this knowledge and being able to take action to avoid the cancer that took her."
Almost two decades are stolen from a woman who dies of ovarian cancer in the UK. A screening tool would change this. Help us raise £1million to protect future generations.