Jo was diagnosed with stage 3c ovarian cancer completely out of the blue in July 2014, aged 39. She has since undergone a hysterectomy and treatment with chemotherapy and an angiogenesis inhibitor drug with the aim of keeping the cancer managed. Through genetic testing, Jo discovered she carries the BRCA1 gene mutation which presents a higher than normal risk of breast cancer. As a working mum with two young boys, living in Harrogate, Jo shared her blog a year ago through Yorkshire Cancer Research about her experiences of the diagnosis, treatment, and living with cancer. As part of Ovarian Cancer Awareness Month, Jo has written another blog post summing up her past 12 months.
After taking 20 months off work throughout treatment and beyond, I wasn’t sure I’d make it back to work, but I did. It’s almost been a year now since I returned and I feel all the better for it. It took a while to adjust despite my employer being hugely accommodating in finding me a role that was well suited to my experience and was structured so that I could work flexibly and part time. As part of my intent to do all I can to control my cancer, or at least put myself in a strong position to face it if it becomes active again, then I can’t help but feel pressured to make time for exercise and ensure I’m eating well. Additionally I’ve come to realise how physical exercise plays a big part for me personally in emotionally dealing with my illness. These were lifestyle aspects I was determined not to compromise through a return to work.
When the opportunity arose to undergo genetic testing I was keen to go ahead. I figured I didn’t have anything to lose by being tested for a gene mutation, irrespective of the outcome. I took the view that if it confirmed I had a BRCA gene mutation then I would be better informed of the risk, know what symptoms to look out for, hopefully have access to regular screening and may have the possibility of accessing more bespoke treatment should a need arise in the future. I also wanted to know for the sake of my sister, relatives and my children, since carrying a BRCA gene mutation comes with a 50:50 chance for each child of the gene fault being passed on, presenting increased health risks and the chance of them passing it on to any offspring.
Ahead of the test I met with a genetic counsellor and was given some literature setting out the implications of testing positive for a BRCA gene mutation, the implications differing slightly depending whether it is the BRCA 1 or BRCA 2 gene. Either way, in someone with an existing diagnosis of ovarian cancer, the risk of getting breast cancer is significantly higher than normal. When the test results confirmed I carried the inherited BRCA 1 gene it did not come as a huge surprise and in some ways was the confirmation I needed. For a long time it felt like it could be the only plausible explanation for my cancer.
According to the information sheet, as someone with ovarian cancer and the BRCA 1 gene mutation I had a 80% lifetime risk of getting breast cancer (compared to the norm of 11%) – just the news I needed! A follow up appointment got off to a positive start. My lifetime risk of breast cancer was reduced to some degree as I’d had my ovaries removed; still not an insignificant risk but welcome news. My options boil down to a) do nothing, b) have annual mammograms and six monthly consultations to identify any anomalies or c) have an elective double mastectomy to bring my risk down to a negligible risk. Option (a) is not an option for me, for now I’ve opted for option (b) whilst I explore the pros and cons of preventative surgery – not a decision to be taken lightly and one I’d want to understand more fully before reaching a decision.
When the genetic counsellor pointed out that I was coming to terms with two life-changing events I had to stop and think what the second was, a cancer diagnosis definitely felt like one for sure and for me, dwarfed the outcome of the genetic testing. I can fully appreciate that for others without a pre-diagnosed cancer, the decision to undergo genetic testing is probably more complex and confirmation of a genetic mutation probably more life-changing.
It’s almost 15 months since I finished active treatment and at times it feels like life is back to normal, or at least a new normal – difficult to shift the always present reality that I have ovarian cancer and the chances of it recurring will remain high. When my head starts going to bad places (usually after waking in the middle of the night), I try to focus on being one of the fortunate ones for whom the cancer remains managed. On the plus side new advances in the understanding between gene mutations and how they respond to different treatments is encouraging.
Hospital visits have thankfully become less frequent. I’m monitored for the ovarian cancer every 2- 3 months and also see a breast consultant due to the BRCA 1 gene mutation. That said I juggled 3 hospital appointments in my first week back at work. The straightforward one – a baseline bone density scan so as to monitor the risk of osteoporosis as a result of having to come off hormone replacement therapy as my cancer is hormone receptive. The one to allay THE FEAR – a panicked call to my oncologist about persistent back pain for a couple of weeks in a place I’d not had it before – cue immediate panic the cancer’s up to something. The pain was definitely manageable but niggles like that play on your mind after a cancer diagnosis, particularly when you’re doing a load of publicity around cancer awareness and encouraging people to seek medical advice if anything is out the ordinary. So I did and thankfully it was just muscular back pain but it was a relief to have it confirmed as such. The third appointment was my first experience of a mammogram and a breast MRI. I wasn’t ready for quite how physical, undignified and painful a mammogram was, I suspect my experience was exacerbated by scar tissue from the relatively recent removal of my portacath which had been used to administer my treatment. Whilst I doubt anyone looks forward to a mammogram I’d encourage anyone invited for one to take the opportunity since early identification of any abnormality is key. Thankfully the scan showed no cause for concern.
I’m not routinely scanned for the ovarian cancer but I did have a scan last summer ahead of an operation to repair a large abdominal hernia stemming from my original surgery to remove the cancer. Thankfully the scan showed no sign of the cancer however my routine blood tests showed an anomaly, only marginal but enough to take the edge off the news of a clear scan. I tried to keep it in perspective but it messes with your head, all I could do was sit it out to see if a trend emerged from subsequent blood tests.
The start of 2017 marked two years since I had my end of chemo scan which I know I have to be incredibly grateful for. Whilst the passing of time since diagnosis means life goes on, I’m still very much cautious about what may be around the corner. My illness has changed my outlook on life and has driven me to do things I wouldn’t have done previously, albeit it comes with perpetual anxiety and self-imposed pressures around making the most of life.
I’m still openly sharing my experience of ovarian cancer diagnosis and treatment to raise awareness of the symptoms and hopefully help others affected by cancer. I continue to be involved in various projects and groups in the health sector as a patient representative – it’s both interesting and feels as if I’m putting my relatively unique experience of a cancer diagnosis, undergoing treatment and ongoing monitoring to good use, to help inform the way it’s delivered to others in a similar position, now and in the future.
Whilst my cancer remains managed I’m keen to shake off the “Jo, the woman who had/ has ovarian cancer” label, yet at the same time I’m keen to use my experience to create awareness of ovarian cancer and equally I’m mindful that the chances of a recurrence remain high. There’s nothing like the minds of small children to keep things in perspective. I’ve overhead several matter of fact conversations with their pals along the lines of “my mum had cancer but she’s had it cut out and had some medicine that made her hair fall out” almost referred to as a badge of honour!
So what does the year ahead have in stall – lots of planned adventures to look forward to, some sporting challenges and ambitions to channel the creative writing.