Sarah outside wearing sunglasses with her daughter

Sarah’s story

Sarah talks about what it's like to live with incurable ovarian cancer, genetic testing and her support group at work.

After being given the ‘all clear’ from stage IV ovarian cancer, Sarah talks about how she will always be living with cancer – and it’s okay to talk about it...


Fragile

I’d been experiencing symptoms on-and-off for about six months before I was diagnosed with stage IV ovarian cancer. I’d gone to see the GP a few times complaining of stomach pain and fatigue but was told it was probably cystitis or the menopause. Despite going back and forth to my GP many times I didn’t know I was experiencing symptoms of ovarian cancer until much later.

Eventually, the stomach pain got so bad that I had to go to the local NHS drop-in centre, who sent me straight to A&E. The doctor there told me to go back to my GP and ask for an urgent scan. Things moved quickly after that. I got a call from the doctor while I was at work. It was quite a shock to find out that my CA125 level was very high. I didn’t really understand what she was telling me, but I knew then that something was really wrong.  

I was initially diagnosed with stage III ovarian cancer and referred to Guy’s Cancer Centre at Guy’s and St Thomas’ Hospital. However, it was at this point that the doctors told me this cancer was actually stage IV, not curable and that my life would be shortened. I vividly remember asking if I’d see my kids grow up and the doctor simply saying, “no”.

I had chemo to shrink the tumours before having surgery. More chemo and then bevacizumab (Avastin®) for a year. However, even while on Avastin my cancer markers started to creep up again. The cancer was back. I ended up needing another six rounds of chemo and started on new ovarian cancer drug olaparib (Lynparza®). Things are stable for now, but it all feels very fragile.  

BRCA 

After my diagnosis I was advised to have some genetic testing and eventually I found out I have the BRCA2 mutation. There was no history of cancer in the family but when I questioned my relatives, I found out that two of my grandad’s four sisters had died young.  

I know that the results of the genetic testing might have an impact on my daughter and I’ve tried to be honest with her about what that might mean. She knows she will need a test at some point, but the genetics team at the hospital has been very reassuring.

Target Ovarian Cancer has also been brilliant. There’s a whole host of daunting and untrustworthy information out there which can scare the life out of you, but Target Ovarian Cancer is truly a source of info I can trust – whether it’s through the website or on social media, it has been a big help over the last three and a half years. 

Living with cancer 

I think people underestimate what it means to be living with cancer. I’ve been in remission since April 2021 and people often think that somehow means you’re cured. But the cancer can come back at any time. It can be hard because although you’ve got a life to lead, you’re also still living with that weight hanging over you.  

That's partly why I wanted to share my story, and why I set up a cancer support group at work. We have over 100 members and support people with HR issues, advise line managers, and just give people a safe space to chat and be with others in a similar position to themselves. I’ve personally had a huge amount of support from the network. So many people I knew didn’t know the right thing to do or say when I was first diagnosed. I wanted to do my part to help support others who might be going through something similar. There’s a lot of us out there who are living with cancer – I want them to know it’s okay to talk about that. 


If you’ve been affected by this story and would like to speak to a specialist nurse, you can call our dedicated support line on 020 7923 5475 or contact us: support@targetovariancancer.org.uk. We're open from 9am until 5.30pm, Monday to Friday.