Published in January 2022

2014 was a busy year for me. For several years I'd wanted to walk the (almost) 200 mile route from St Bees Head to Robin Hoods Bay following the classic Coast to Coast trail. June arrived and 14 days later myself and three friends walked down the busy cobbled street towards the North Sea to complete our challenge. As if this wasn't enough of a challenge for one year, whilst I was on a roll I also decided to do the Yorkshire Three Peaks Challenge in August, a walk of 26 miles over 12 hours climbing Pen-Y-Ghent, Whernside and Ingleborough. I was fitter than I'd been in a long time.

Life returned to normal, working shifts as a CT & MRI Radiographer in a busy hospital (not the best occupation to keep up a balanced diet, often grabbing food on the go and frequently tucking in to 'treats' for a quick energy fix shared with colleagues).

During the autumn, I noticed that I had a bit of bloating which came and went, but seemed to be worse after eating. Never one to go to the doctors apart from routine smear tests and holiday vaccinations, it was obviously bothering me enough to book an appointment. Telling my GP that I thought it was probably a food intolerance as I ate a lot of cereals, bread, pasta and suchlike, he arranged for a celiac blood test and also commented that for someone of my age (I was 45) it was very unlikely to be a gynaecological problem. I can't remember whether there was a physical examination of my abdomen.

The blood test came back negative, although I still tried to reduce my wheat intake. There was no follow up plan and I continued much as before.

Fast forward to spring 2015. After a winter without much walking, I was on a walking trip in Majorca. The changes to my diet hadn't seemed to have made much difference so I decided to book another GP appointment for my return. But then life got in the way, more walking, this time in the Lake District and it was another six weeks before I actually made the appointment.

I saw the same GP, who this time did perform an examination of my abdomen and said that he could feel ‘something’ in the lower part of my pelvic region and would arrange for an ultrasound scan. Recalling events, I can’t actually remember whether he flagged up the possibility of cancer at this appointment, but I’m sure that I realised what the possibilities were, given my occupation. It took around a week to get the scan but less than 24 hours for the GP to call me early the following morning with the results.

Following my scan results, which showed a mass, an urgent referral was made to the gynaecology team, who also arranged a CT scan and blood tests, including CA125, which was over 2000. At this stage I knew nothing of this simple (although not truly specific) blood test but I know that this was never considered by the GP when I first visited in 2014 .The upshot was that a definitive ovarian cancer diagnosis could still not be made but that urgent surgery was essential. So less than six weeks after scaling big hills in the Lakes, I was consented and admitted for a full hysterectomy, plus anything else which may be required, including a bowel resection and stoma. Needless to say, I ended up with the lot as the large tumour had ruptured and affected nearby structures.

I was subsequently diagnosed with stage 3c high grade serous ovarian cancer which responded well to carboplatin/paclitaxol chemotherapy, although I only managed five of the intended six cycles due to reducing levels of platelets (a type of blood cell). A period of recovery followed, as well as learning to manage my ileostomy and within seven months I was back at work full time and two months later walking up more big hills in the Lake District.

It was at a follow up appointment the following year that I asked whether I would benefit from HRT (Hormone Replacement Therapy) given my early menopause. The registrar wasn't certain so sought out a colleague. It turned out that the genetics department were undertaking a review of women diagnosed with ovarian cancer to better understand any possible links to breast cancer via the BRCA genes and they asked whether I wanted to be referred for discussion of genetic testing.

I'd heard of the gene but was unaware of any links to ovarian cancer, even with my medical knowledge. Something was now starting to make sense, as my paternal grandmother and aunt had both died from breast cancer (my aunt, aged just 51).

I was keen to undergo the testing to see if I had an alteration in the genes, as it was explained that this knowledge would be useful to manage any future treatments should I have such a change and subsequently developed breast cancer. I now know that I am BRCA1 positive and so is my brother who was also subsequently tested, as he has his own children (I never had children). Now I also have annual breast screening and my brother has more frequent PSA blood tests for prostate cancer (another risk factor I was previously unaware of linked to our 'dodgy' genes).

What I remember most vividly, of all the consultations and appointments that I've had over the years was the one with the geneticist after I'd received the gene testing results. He had a medical student with him and asked her what simple five word take home message should always underpin her fledgling medical career and initial assessments? The answer wasn't complicated:

Always take a family history.

Would it have made a difference to me? Well, given my genes, no, but it may have been picked up earlier if my GP had asked more questions of me at the original appointment, or I had been more aware of potential links between breast and ovarian cancers. I now realise that I should have gone back to the GP sooner, but it was the people I scanned at work, not me, who were the ones that were really ill.

And what of the future? Regular reviews, CA125 blood tests and CT scans revealed no areas of concern. The ileostomy was reversed in 2017 and I continued with the annual breast screening.

At the 4 and a half year review, my CA125 was slightly raised but still only in double figures and a further CT scan revealed nothing of concern. I remained on watch and wait, albeit with a slowly rising CA125. I was fortunate to get another scan in July 2020, after we came out of the first Covid lockdown, which revealed an area of concern focused on the sigmoid colon (the last section of the bowel, which connect to the rectum). Delays caused by Covid backlogs pushed back a colonoscopy (an examination of the bowel) and biopsy (a medical procedure that involves taking a small sample of body tissue so it can be examined under a microscope) by a couple of months, but eventually a confirmed diagnosis of a first recurrence was made (after a new primary bowel cancer was ruled out).

I've since had more surgery, a new colostomy and another cycle of six chemo treatments during 2021. I started PARP inhibitors in August and although they have taken a lot of getting used to (I'm still extremely easily fatigued), I'm finally able to discuss a return to work within the next couple of months.

I don't yet have the energy to resume my love of walking in the hills, but I'll not be beaten by this and have a trip to the Lakes booked for May 2022. I may not be able to reach those summits, but at least I'll be able to admire them from ground level.