Gemma - 'Why we need better testing for ovarian cancer'

Gemma was diagnosed with ovarian cancer, aged 34. Here she shares her story, including how her ovarian cancer was discovered while she had womb cancer, and why improved testing is vital to early diagnosis of ovarian cancer.

Gemma talks about her experience of testing and how, bizarrely, she was ‘lucky’ her cancer was found relatively early - because she had another cancer.

“I went through many tests and painful procedures - most of which were optional - but cancer wasn't even part of the conversation. It took two years of scans, bloods and procedures to get a diagnosis. My cancer was often mistaken for cysts or polyps, including on cat-scans, MRIs and ultrasounds.

I was diagnosed with ovarian cancer following treatment with a radiologist for my womb cancer. This happened because when the radiologist went to count my follicles for egg freezing, she saw me flinch when the camera touched my ovary. I felt some discomfort but I had no idea there was anything wrong with my ovary - I knew the cancer hadn’t spread out of the lining of my womb. The radiologist referred me for a CA125 blood test which found I had stage 1 ovarian cancer. 

In this way, the womb cancer was actually a blessing as it led to the incidental finding of the ovarian cancer. Otherwise, I never would have known. She saved my life.

The importance of early diagnosis and how health professionals must work together to improve testing of ovarian cancer

The only ovarian cancer symptom I experienced was a dull ache in my lower back. Everyone I have spoken to either had no symptoms, or the symptoms at early stages were so minimal and common that ovarian cancer wasn’t easy to diagnose just through consultation alone.

My GP was incredibly supportive and did everything they could from when I first approached them with symptoms. They put me on an urgent pathway to the hospital as they should have, it was just unfortunate that the hospital decided that I was not an urgent priority. 

If my GP hadn’t been so proactive, things could have been much worse for me. The ovarian cancer may not have been diagnosed early and I would have had nobody in my corner pushing the local hospital. 

From my experience, hospitals push back on offering a CA125 test unless a certain criteria is met. This needs to change. 

If you or a woman you know has symptoms of ovarian cancer, or a new normal in regards to their menstrual cycle, please know that they can ask for a CA125 test. If I had known I could request one, I would have done so. This test told me more about what was wrong in two hours than in two years worth of painful hysteroscopies.

I think that CA125 tests should be rolled out more frequently - especially to women who have polycystic ovaries, endometriosis, or other conditions which can be confused with cancer and vice versa.

Fearing that the cancer will return

I have been in hospital having my second surgery to remove my remaining ovary, some lymph nodes and to examine and biopsy all my organs for any spread.

The surgeon said it all went well and all my organs looked healthy, but I will be getting chemotherapy even if the biopsies come back clear. She said even a single cell left over could mean a recurrence - I think this even further highlights how important early diagnosis is. 

The last few months have been really challenging, but my outlook is very positive. I expect to be under hospital care for quite a while, but the final goal is that I'm fully cured after my further surgery and chemotherapy. I would ask for prayers and positive thoughts going forward." 

In the UK, around 7,500 women are diagnosed with ovarian cancer each year. Unfortunately, it is often diagnosed at a later stage when survival is at its lowest. We can save thousands more lives by funding scientific research that will improve testing and diagnose ovarian cancer as early as possible. 

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