When Pauline was diagnosed with stage 4 ovarian cancer in 2021, she desperately wanted to read stories that gave her hope. Just before her 60th birthday, Pauline is sharing her experience and how she is living her life to the fullest since being told at the end of chemo and surgery, there is now no evidence of disease.
I want to give hope to someone who is just starting this journey. I was desperate to find stories like mine when I was initially diagnosed with stage 4 ovarian cancer. I had no idea where I would be or how it would go.
Symptoms I put down to lifestyle
Up until April 2021 I was a very busy, fit, active and I thought, a healthy 57 year old woman.
However, I had been feeling extra fatigued so I contacted my GP complaining primarily of awful tiredness which had been ongoing for some time, but I was putting it down to the pandemic, lockdowns and disconnection from normality, and also my age.
At that appointment, I also mentioned that I had developed a ‘feeling’ in my lower abdomen whilst out walking. She then asked me the question “and what about the bowel and waterworks?” at which point I told her things were actually a bit off kilter (I had been putting the more frequent bathroom visits down to my having recently increased my water and fruit intake).
The GP that put me on the right pathway
I credit my GP for being aware of the symptoms of ovarian cancer, for asking the right questions and therefore getting me on the pathway to a diagnosis. I know, from speaking to many women over the past couple of years who I have formed friendships with through Target Ovarian Cancer’s Ovarian Cancer Community on facebook that this is not the experience for many.
Unknown to me, among other blood tests, she did a CA125 blood test which can indicate ovarian cancer. That came back raised – the normal range is between 0-35 and mine was at 3,700. Things then escalated very quickly.
Within a week I underwent a series of ultrasound scans, CT scans and biopsies and on 18th April I was given the devasting diagnosis – not only did I have ovarian cancer but, because it had spread outside of the abdomen into my chest, around my oesophagus and heart and on my bowel, it was stage 4b.
Chemotherapy and surgery
Going from believing I was healthy, within two weeks of the diagnosis it became apparent that I was extremely ill. My abdomen was filled with fluid (known as ascites) to a point I looked about seven months pregnant. I was admitted to hospital where they drained off four litres of fluid and I spent a night on intravenous fluids and antibiotics.
However, the antibiotics caused raised liver function but until this could be confirmed as the cause, the initial chemotherapy had to be postponed. I got my first session of chemo on 18th May, by which stage my CA125 was further raised to 6,900 and my abdomen was again filled with ascites. I had a further four litres of fluid drained off two days later.
After four cycles of chemo, and much discussion with both my oncology team in the Belfast City Hospital and the team at the Christie Hospital in Manchester, it was finally agreed that I could be taken to surgery. This was also an extremely traumatic journey as due the pandemic, limited slots for theatre were available.
Furthermore, after being ready to go to theatre on two occasions the operation was cancelled due to my neutrophil count being too low which would have rendered me unable to fight any infection I may have developed post-surgery. Eventually on 24th September I had my operation of a radical hysterectomy and full pelvic clearance.
Determined to get on and finish my last two cycles of chemo, three and a half weeks later I had recovered sufficiently to have cycle five and finished my last cycle on 8th November 2021. My final end of treatment scan reported the most welcome result that there was no evidence of disease and since then my CA125 marker remains stable at 7 or 8. I was then put onto a maintenance programme for two years and so far, these drugs have kept me well and I am back living my life to the best of my ability and with a heart full of gratitude.
This needs to change
It was stories like mine that I desperately wanted to hear back in April 2021. Alongside that reason for sharing my experience, it is also because of the disbelief, and dare I say anger I feel, that whilst I was well aware of breast cancer and cervical cancer symptoms and went for regular checks for both, I had little to no awareness of the symptoms of ovarian cancer. After diagnosis, and with the benefit of hindsight and further knowledge, I realise I also had another couple of symptoms as well as the ones I previously mentioned.
I feel we must support Target Ovarian Cancer in their quest to fund research, educate GPs and get awareness out to all women and save more lives. We must strive for more media coverage in newspapers, magazines, TV adverts and leaflets in surgeries.
More must be done so that women are diagnosed at much earlier stages, when the outcomes could be more promising from the outset. Discussions must be had with women during their cervical smear exams as many women wrongly believe the smear test will pick up ovarian cancer. Opportunities like this should not be missed. This must change.
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: [email protected]. We're open from 9am until 5pm, Monday to Friday.
If reading this story has helped you, join the Ovarian Cancer Community to connect with more people affected by ovarian cancer: www.targetovariancancer.org.uk/onlinecommunity
