Ovarian cancer survivors warn other women to look out for signs of the disease

Ovarian cancer survivors warn other women to look out for signs of the disease

Aged 13, Gautami Motupally put symptoms of bloating, weight fluctuation and irregular periods down to puberty. Instead her body was trying to tell her she had a 3 kilogram ovarian cancer cyst.

She is one of more than 1000 women a year - three each day - diagnosed with a gynaecological cancer. More than 400 of them will die.

These handful of cancers kill more New Zealand women than the annual road toll but stigma and a lack of awareness keep them largely out of the limelight. But survivors such as Motupally want that to change.

There are five gynaecological cancers: cervical, endometrial (uterine), ovarian, vaginal and vulval. Ovarian cancer is the deadliest, with a five year survival rate of about 40 per cent.

The disease – which claims a life every 48 hours – largely goes unnoticed until it has advanced, as its symptoms are often conflated with less serious, non-cancerous conditions.

These include abdominal bloating, indigestion, changes in appetite, a more frequent need to urinate, changes in bowel habits and constipation and fatigue.

Motupally is an ambassador for the Gynaecological Cancer Foundation, as she wanted better representation of who this cancer can affect - 'anybody'.

For about three months, Gautami Motupally felt constantly bloated, was full after meals and regularly constipated. She lost weight and had irregular periods.

But the then-13 year old put her symptoms down to puberty.

"I thought it was normal," she said.

But when her abdomen started to swell, her mum booked a doctor's appointment.

Ovarian cancer survivor Paula George wants women to 'know their normal' and learn the signs of ovarian cancer.

Her GP could tell something was wrong and sent Motupally straight to hospital.

The next morning she had surgery to remove a 3 kilogram cyst and her right ovary.

Three weeks later, on the day she was discharged from hospital, Motupally was diagnosed with stage 3b ovarian cancer.

After undergoing chemotherapy, Motupally, now aged 21, is "completely clear" of cancer.

She is in her third year of an occupational therapy degree at AUT and is an ambassador for the Gynaecological Cancer Foundation.

She wants "better representation" of who can be affected by ovarian cancer, and is working to break down the stigma around women's health and women's bodies – particularly among the Asian and Indian communities.

Motupally also wants vaginal health to be as normalised as talking about breasts and breast cancer.

George at the end of 2018 once she had finished treatment.

Former athlete Paula George (Georgie) had always been fit, energetic and healthy.

So when she started noticing a few "little niggles" over a few months – a sore back, bloating as though she were pregnant, fatigue, joint pain and swelling – she sought the advice of a doctor in Auckland, where she lives with her wife and two kids.

Her GP sent her to hospital, but no-one could work out what the problem was.

She didn't link the symptoms: "I had no idea that grouped together they could be a warning sign".

About a month later, while on holiday in Christchurch in March 2018, George ended up in a hospital emergency department in a lot of pain.

An ultrasound later revealed a large tumour.

She flew back home to Auckland, where she had urgent surgery to remove the 30cm tumour. She also had a full hysterectomy and had her appendix, omentum (fatty-tissue covering the abdomen) and part of her diaphragm removed to prevent the disease spreading.

George was diagnosed with stage 1c clear-cell ovarian cancer about three weeks later. It was an early stage, but "aggressive".

She counts herself "lucky" to have been in pain as it was the reason she got checked out.

Most women would have experienced her other symptoms first-hand: having an achy back, feeling tired, pain during intercourse, irregular periods and bloating, but "if you're in pain you tend to seek help", George said.

George celebrated one-year since finishing chemotherapy earlier this month.

Only 15 per cent of women catch ovarian cancer at stage one. Most ovarian cancers are caught in the later stages of the disease when treatment options are limited, and survival rates are "extremely poor".

A cervical smear tests for changes to cells in the cervix, but there are no screening options for the other four gynaecological cancers – so being educated about the symptoms is imperative.

Organisations such as Talk Peach are hoping to do just that.

Founded by a group of survivors and spearheaded by Tash Crosby, Talk Peach seeks to educate people about the signs and symptoms of gynaecological cancers to reduce late stage diagnosis.

Crosby, who battled stage 1 ovarian cancer, said survival rates had remained largely unchanged for 30 years.

She said this was partly due to a lack of funding and research, but also a "general lack of awareness".

Crosby said it was "frightening" how little many women knew about their gynaecological health, particularly that a smear test was not a "warrant of fitness".

"Many women assume that ovarian and other reproductive cancers are 'silent killers' ... but the truth is, these cancers do have symptoms."

Crosby and Talk Peach encourage women to "know their normal" and seek help if anything changes.

"It really is the key to early diagnosis and survival."