'I wish I'd pushed more': Woman diagnosed with stage 4 cancer after symptoms put down to IBS

A 40-year-old woman who has been diagnosed with incurable cancer almost two years after first raising symptoms with her GP claims she faced delays at every turn.

Claire O'Shea, from Cardiff, first discovered a lump in her abdomen in August 2021 and was prescribed medication for irritable bowel syndrome.

It was only when a masseuse asked her if she was pregnant that Claire feared it might be something more serious.

She has shared her experience as part of a Senedd inquiry into the experiences of women with gynaecological cancer - the fourth most common cause of cancer death in women in Wales.

In January this year, only a third of patients with suspected gynaecological cancer in Wales started treatment on time.

Within three weeks of the cancer diagnosis, Claire underwent a total hysterectomy.

"I think there was an opportunity for the GP to have spotted it sooner," Claire said.

"Reading about the symptoms I was presenting with, like constipation sometimes, bloating, discomfort, they're symptoms of lots of different gynaecological cancers, and that should have been a red flag for anyone."

Claire went back to her GP multiple times and was eventually referred to the University Hospital of Wales in Cardiff for an ultrasound in February 2022.

She claims specialists there downgraded the suspected cancer to a fibroid, which was removed through surgery in September.

Meanwhile, a biopsy was taken and six weeks later the results revealed Claire had sarcoma - a rare type of cancerous tumour in her uterus.

"It's particularly devastating because it's such an aggressive cancer, it's really, really aggressive.

"If it gets caught early then prognosis is okay-ish, if it's caught late then the prognosis is awful - it's like 14% of people survive up to five years, and I knew already that I'd been battling already for around two years."

Within three weeks of the cancer diagnosis, Claire underwent a total hysterectomy.

An earlier scan had revealed what doctors believed to be liver cysts, and Claire claims she was assured this is common.

But after carrying out her own research and pushing for further investigations, a second scan in April revealed that the cancer had actually spread to her liver, lungs and bones.

"With the pressures on the NHS at the moment that surgery was months in the waiting while the cancer was growing.

"For me there's been a catalogue of small errors at every turn.

"It's systemic, it's a problem with attitudes, particularly in primary care towards women and being told either you accept pain, or I felt a bit neurotic, like it was 'she's got nothing more to worry about that an upset stomach', and it was obviously much worse than that."

Claire has now been referred to a sarcoma consultant at Velindre Cancer Centre, a specialist facility in Cardiff, and is due to start chemotherapy.

"I understand the complexities of running a massive system, that you can't afford to treat everyone with urgency, but I wish I'd been listened to earlier because I think if I'd been diagnosed at my first appointment with the GP I would've saved myself months and I might have just had a fibroid removed.

"I feel really lucky, which sounds ridiculous given the circumstances, but I am articulate, I do have a university degree, I have been brought up by a family where we talk about our bodies and health.

"I think about all the women who don't have the privilege or confidence that I have to self-advocate.

"The prognosis for this cancer at this stage is terrible, and I just think those statistics are probably that bad because there's so many women who aren't able to advocate or aren't taken seriously."

In 2021, 373 women in Wales lost their lives to gynaecological cancers, which include cancer of the uterus, ovaries, cervix, vulva and vagina.

Tenovus Cancer Care, a charity that also gave evidence to the Senedd inquiry, which launched on Thursday.

  • What are the signs of gynaecological cancer?

There are different types of gynaecological cancer and the symptoms for these can be very general. 

The NHS advises if there are any of the below symptoms then to see a GP.

Ovarian cancer can cause symptoms including abdominal pain, bloating, indigestion, reduced appetite and altered bowel habits as well as weight loss.

The most common symptom of both womb and cervical cancer is abnormal bleeding from the vagina. Womb cancer is particularly common in women who have been through the menopause and stopped having periods.

Vaginal discharge and discomfort or pains during intercourse is also a key symptom of cervical cancer.

Chief executive Judi Rhys said: "We've been really shocked to listen to the testimonies of some women and one of the themes that has really come through is that people have felt dismissed, they've felt fobbed off.

"People have been told they are a nuisance, that they are neurotic, or at least they've been made to feel that way."

The charity is hoping for changes in the way consultants communicate with women.

"A lot of the women we've talked to have real red flag symptoms, so we really want to urge primary care to listen to these women," Ms Rhys continued.

"We know that the NHS is under extreme pressure, but an awful lot of the improvements here are not actually about investing more money.

"It's about listening to women and making sure that the processes are there that mean they don't get lost in the system and they are fast-tracked through if they do have those red flags and symptoms."

In response to Claire's claims, Cardiff and Vale University Health Board said it is unable to comment on individual cases.

A spokesperson said: "We would ask Claire to contact our concerns team where they will be happy to discuss any concerns she has around her care."

The Welsh Government has said it is committed to improving outcomes, and has set out a detailed approach to improve diagnosis and treatment of cancers, including the introduction of rapid diagnostic centres.

It added that it is specifically investing in gynaecological cancer research.