Fiona: "I feel grateful and privileged to have been able to contribute to smoothing the pathway for other people "

After a shock diagnosis of ovarian cancer, Fiona gave up the career she loved to retire early. Getting involved in the creation of a new NICE guideline gave Fiona a new focus and the chance to make a difference. She tells us her story here.

"I live with my husband in a small town in Perthshire, Scotland and was diagnosed with advanced ovarian cancer in August 2019 at the age of 57.

That came as a complete bolt from the blue and was completely devastating.

I had not had much in the way of symptoms (just some intermittent left pelvic discomfort then a few weeks of irritable bowel symptoms) and I had no family history of ovarian cancer, so I was not expecting this diagnosis at all.

I went through the usual treatment for ovarian cancer – debulking surgery (which is major and extensive surgery to remove as much of the disease as possible) and six sessions of chemotherapy.

Because of this, I was commenced on a maintenance treatment drug called olaparib - a PARP Inhibitor - after completing chemo.

Initially, for the first year after diagnosis, I was off from work on sick leave. I had worked in the health service for virtually all my career and was fortunate to have this length of sickness cover. As it got near to the end of the year of absence, it was apparent that I was still not going to be fit enough to be able to return to work, so I applied for ill-health early retirement. This involved having to be dismissed on capability grounds first, which was a hard thing to accept at the time and a very strange way to finish a 40-year career and be catapulted into unplanned retirement!

However, I was appreciative that I did receive ill-health retirement and I knew it was the correct thing to do, albeit that it was difficult at the time.

I had chosen my specific career because I wanted to do something that would make a difference so, when I was flung into retirement about 5 years before I had intended, I really didn’t know what to do with myself.

I had joined several ovarian cancer support groups online. They are a really good source of information, advice and support for people with cancer and their family & friends. I would thoroughly recommend joining these groups, if you have cancer yourself or are supporting someone who does. No-one knows more about how it feels to be experiencing cancer than the patient themselves.

I had noticed, on one of these forums, that there was an advert for a lay person to become a member of a NICE (National Institute of Health and Care Excellence) committee, looking to develop a new guideline for Familial Ovarian Cancer.

NICE is a UK organisation, based in London, that develops guidelines and policy for all manner of health and care topics, with the aim of achieving clarity in care & treatment pathways for clinicians and the public and providing guidance on uniformity of treatment, based on best practice and research. The guidelines are periodically updated, so that they capture any advances or changes to treatment.

I was well enough by this time and thought “I could apply for that!”

Committee membership involved 12, mainly full-day, meetings online, for a period of 18 months. It has been a very valuable experience for me to work on the committee. NICE have been incredibly supportive, as have the other committee members. Because this is a clinical guideline, the committee members (apart from the development support team) are mainly from clinical backgrounds, most of whom are involved in research into developing new treatments and pathways for ovarian cancer. I have learned so much during my time on the committee and have always felt that my input was important and that I have been listened to.

The guideline is due for publication this month (March 2024) and it should provide clarification, making the pathway clearer for people who have an inherited genetic mutation that increases their risk of developing ovarian cancer. It should aid clinicians and the public in clarifying what should happen, ideally helping to identify people who have these mutations earlier, so that preventative action can be taken to reduce the risk of developing ovarian cancer.

It has been a very positive and rewarding experience for me. I feel grateful and privileged to have been able to contribute to helping and hopefully smooth the pathway for people with ovarian cancer-related genetic mutations.

I am also very grateful that I am continuing to keep well and am now approaching 4 ½ years from my diagnosis. I am really enjoying retirement, seeing friends and family regularly and travelling as much as possible!"

To read more about genetic testing, hereditary risk and how that impacts treatment of ovarian cancer, visit our Hereditary Hub

To find out more ways to get involved and take action against ovarian cancer, click here.