Too often, women are being sent away with a diagnosis for more common illnesses when they actually have gynaecological cancer.
Women feel their concerns are often dismissed or downplayed, and that they can be made to feel like a neurotic nuisance, according to evidence heard by a Senedd Committee.
The Senedd Health and Social Care Committee has published its report about gynaecological cancer care in Wales - "Unheard: Women's journey through gynaecological cancer"
It contains 26 recommendations to Welsh Government about how women’s health services should be better supported and how to stamp out a dangerous bias which is putting lives at risk.
During their work, members of the Committee heard powerful evidence from women who were left dealing with the life changing consequences when their concerns were repeatedly dismissed by healthcare professionals.
Claire’s Story
Claire O’Shea from Cardiff 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,” said Claire in her evidence to the Committee.
“I went to Istanbul on a holiday with some friends and went to a hammam, which is a Turkish bath where you get washed and a massage. When I was in there, the woman stopped the massage and in broken English said, “Lady, baby?” thinking I was pregnant.
“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. Claire is sharing her story to increase awareness of Uterine Leiomyosarcoma.
Judith’s Story
Judith Rowlands, from Anglesey, 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.’” said Judith in her testimony to the Committee.
However, her doctors felt this wasn’t the case, and insisted that they would not expect to see that type of cancer come back.
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.
“The cancer is in my pelvis, I have two larger tumours and they are exactly where the pain has been all along, exactly there,” said Judith in her evidence. “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.”
Judith wanted her story to be told in the hope it can prevent other women going through what she has. Judith passed away in May 2023, shortly after her video was shown to the Committee.
Linda’s Story
Linda Drew, from the Vale of Glamorgan, didn’t know about ovarian cancer until she was diagnosed and believes lack of awareness is a problem preventing people for receiving timely treatment.
“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.’,” said Linda in her testimony to the Committee.
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. She was seen by five different doctors at her surgery, but it was a conversation with a friend which eventually led to her diagnosis.
“I went out for dinner my friend and her husband who is a surgeon. I explained to him my symptoms, and he asked me 3 or 4 questions and asked if he could feel my tummy. The next day he said “I’m going to get you in” and he knew that day that something was wrong.”
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.”
Women Know When Something is Wrong
The experiences shared by Claire, Judith, Linda, and several others, echo the evidence brought to the attention of the Committee by organisations such as Tenovus Cancer Care, Target Ovarian Cancer and Jo’s Cancer Trust among others.
“The Committee feels privileged to have heard extremely powerful testimonies from courageous women such as Judith Rowlands, Claire O’Shea and Linda Drew,” says the Chair of the Senedd’s Health and Social Care Committee, Russell George MS.
“We were struck by their determination to raise awareness of gynaecological cancers, and in awe of Judith’s tenacity to ensure her story was heard during the most difficult days. Through their harrowing accounts all the women who shared their stories with us have brought to the fore the realities of these devastating conditions.
“Early on in our inquiry, it was clear that women feel their health concerns are not being taken seriously. Their symptoms are often dismissed or downplayed, and, in many cases, they are made to feel like a neurotic nuisance. We’re not suggesting that every woman has a bad experience, but it does seem that when things go wrong, they go badly wrong.
“Gender bias can influence how healthcare professionals perceive and interact with female patients. Stereotypes and preconceived notions about women’s emotions and pain tolerance can lead to dismissive attitudes. Ultimately, women know their own bodies. They know when something is wrong, and those concerns must be listened to and acted upon.
“In our report, we have presented Welsh Government with 26 recommendations on how services can be improved for women with gynaecological cancers. We must see urgent action so that other women will not have to go through what Claire, Judith, Linda and countless others did.”
Knowledge is Power
As the powerful stories heard during this inquiry testify, awareness is key in improving survival rates for all gynaecological cancers.
The Committee is calling on Welsh Government to fund frequent and far-reaching public awareness campaigns to raise the profile of the symptoms and encourage women to seek medical attention promptly. It should also be better known that cervical screening will not detect the other types of gynaecological cancers.
This will empower women to not only seek advice but to make their voices heard as only they themselves can truly know their bodies.
Better support for GPs should also be a priority. As the first port of call for so many ailments, recognising the signs and symptoms of cancer isn’t straightforward. The Committee want to see more education opportunities for GPs, to keep up with latest guidelines, and for them to receive support from secondary care to assist in the assessment and referral of patients with potential gynaecological cancers.
The Committee were also concerned about the lack of resources and workforce data dedicated to the different types of gynaecological cancers. This should be addressed as soon as possible, to better understand where services are lacking and where more resources are needed.
The Committee has put forward a total of 26 recommendations for Welsh Government, based on the evidence they have received during this inquiry. The report will now be sent to Welsh Government for their consideration. The Committee’s report and the government’s response will be debated by the Senedd during a Plenary meeting in the New Year.
Inquiry: Gynaecological cancers
Unheard: Women’s journey through gynaecological cancer: Read the report
