In Wales, approximately 1,200 people are diagnosed with a gynaecological cancer each year.
These cancers include cervical, ovarian, endometrial (also known as womb or uterine), vulval, and vaginal cancers.
Unfortunately, there is still a significant lack of awareness surrounding these types of cancers.
Their focus is on determining if individuals with symptoms feel adequately heard and well-treated by healthcare professionals, as well as assessing the effectiveness of post-diagnosis support services.
Working with Tenovus Cancer Care, the Committee invited women who had experienced a gynaecological cancer to share their stories.
We are incredibly grateful to everyone who came forward for their honesty and bravery.
‘I wish I’d pushed more’
Claire was diagnosed with Uterine Leiomyosarcoma, a rare and aggressive cancer, almost two years after first raising symptoms with her GP.
“I’d been going back and forth to my GP over several months. I carried on going back and forth and ended up with a diagnosis of irritable bowel syndrome—was given medication for IBS. I knew it wasn’t IBS because, actually, I wasn’t really having bowel irregularities particularly.”
“I went to Istanbul on a holiday with some friends, went to a hammam, which is a Turkish bath where you get washed and a massage, and when I was in there I had a massage, and the woman stopped the massage and in broken English said, “Lady, baby?” thinking I was pregnant. So, I went white. I knew I wasn’t pregnant, but it all became very apparent to me then that the lump was, actually, probably in my reproductive organs. And I remember talking to my friends, like, “My God. How is a Turkish masseuse doing a better job of telling me what’s wrong with me than my GP has for months?”
Since first taking part in the inquiry, Claire’s cancer is now at stage 4 and has spread to her liver, lungs and bones. She’s currently waiting to start chemotherapy.
Claire is sharing her story to increase awareness of Uterine Leiomyosarcoma:
“Uterine Leiomyosarcoma is a rare and aggressive cancer; because of this it is often diagnosed late, leading to devastating consequences. If awareness, attention and research were achieved, many cases could potentially be prevented or cured. Too many patients end up having palliative care soon after diagnosis.”
‘There are symptoms’
Linda didn’t know about ovarian cancer until she was diagnosed.
“I saw this list…and I’d literally ticked every one: the bloated stomach, stomach pain, needing to wee more often, extreme fatigue…If I’d seen one of those posters a year before, at least I would have said to my doctor, ‘Look, can I have this? I think I’ve got this ovarian cancer.’
“I’d heard of cervical cancer and all the obvious cancers, and I always used to go for my regular cervical smear test.”
Her symptoms were mistaken for IBS (irritable bowel syndrome) and urinary tract infections, which have similar symptoms to ovarian cancer. Unfortunately, this misdiagnosis is common for women.
Linda’s been cancer free for 13 years. Surgery to remove two large cysts, one 22cm, the other 17cm, was successful.
Now, she shares her story whenever she can to help other women:
“They call it “the silent killer”, because by the time you’re diagnosed, it’s too late. So, at any opportunity, I raise awareness of the symptoms…and that there’s no need for so many people to die of ovarian cancer, because there are symptoms.”
‘They’d made me feel like I was making it up’
Judith contacted her GP when she started bleeding after the menopause.
She was prescribed HRT but when the bleeding continued, she knew something was wrong, as her mother had also been diagnosed with ovarian cancer. Judith was eventually diagnosed with endometrial cancer and underwent a hysterectomy.
However, after the hysterectomy Judith experienced terrible pain starting in her stomach and affecting her leg so badly she couldn’t walk.
“I kept saying, ‘I think I’ve still got cancer.’
However, her doctors felt this wasn’t the case, “No, definitely not…we'd never expect to see that your cancer would come back, and if it did come back you'd be older and it would affect you in a different way.”
Despite being referred to a pain clinic, Judith continued to experience excruciating pain and was finally sent for a scan after attending same-day emergency care for the pain. The scan revealed that the cancer had returned and was now incurable.
Judith wants her story to be told in the hope it can prevent other women going through what she has.
“I went into that hospital healthy, apart from this cancer that we were going to get rid of, and I came out and I’d lost everything.”
What happens next?
The Committee will continue to take oral evidence from relevant groups and organisations throughout the summer term. In September, we will question the Minister for Health and Social Services on what we have heard in written and oral evidence, and through our engagement work.
The Committee will then prepare a report, which sets out our findings and makes recommendations to the Welsh Government for areas of improvement.
The Welsh Government’s response to the report will then be debated in the Senedd chamber.
Follow the inquiry
Keep up with all the latest developments in the inquiry into gynaecological cancers by:
- Following the inquiry on our website
- Keeping up to date with our social media channels
- Subscribing to Senedd Research articles
Help and support
Tenovus Cancer Care: If you’re worried or have questions about cancer, or would like to access our services, please call our free Support Line on 0808 808 1010.
Jo's Cervical Cancer Trust: If you have a question, want reliable information or just need to hear a friendly voice our free helpline is here for you. Call us on 0808 802 8000.
Target Ovarian Cancer: When you need information, friendly support or someone to talk to that understands – call our specialist nurses on 020 7923 5475. Our support line is open Monday-Friday 9-5pm.
Macmillan Cancer Support: If you or someone you care about has been diagnosed with cancer, we're here to help. Call us on 0808 808 00 00 8am to 8pm. It's free to call from landlines and mobiles within the UK.