'My cancer was diagnosed too late'

Joanna Isles believes a lack of awareness by the medical profession about ovarian cancer is to blame for the fact that she will soon die.

It took four years, and repeated trips to the GP and to hospital before Joanna, 42, from near Poulton-le-Fylde, Lancashire, was diagnosed with the disease.

By the time it was finally identified, Joanna's cancer was so advanced that effective treatment was impossible.

Doctors were initially confused by the fact that Joanna also suffers from the digestive disorder Crohn's disease, which they thought responsible for the mysterious pains of which she complained in her lower pelvic area.

However, they also missed a vital clue - that Joanna had a history of ovarian cancer on her father's side of the family.

"Doctors tend to focus on whether your mother or sister has had ovarian cancer," she said.

"But just because a man can't develop the disease doesn't mean they don't carry the gene which can cause it, or they can't pass it on."

Joanna eventually underwent explorative surgery at the beginning of last year. The news was bad: both ovaries had tumours, and secondary tumours were spread throughout her lower body.

She underwent chemotherapy, but, after stepping up the dose, decided to stop taking it in January. She now has months to live.

Raising awareness

In the time that she has left, Joanna and her husband are planning to set up a charity to raise funds to screen women, who like her, are potentially at risk of developing hereditary ovarian cancer.

"I realise that only approximately 5-10% of cases are hereditary but for the families involved it can be devastating, as usually the cancer onset is at a younger age," she said.

"I have three children aged 13, 11 and four. They are all at risk on inheriting the gene and my daughter is at a high risk of developing both breast and ovarian cancer herself.

"My father has seen his grandmother; mother, aunt, cousins and now his daughter all die young of this terrible disease.

"At present there isn't much funding for screening women like myself and it would appear that not many people including GPs are aware of the risk factors especially for women in my position where the disease has been passed down my father's side of the family."

Family tree

Since she was diagnosed in January 2003 Joanna has researched her family tree, going back to her great-grandmother.

She found that ten female members of her family have died from ovarian cancer between the ages of 40 and 60, and two have had breast cancer in their early thirties. There may well be more.

"I am led to believe by the genetics department at Christie Hospital, Manchester, that the faulty gene we carry is in fact the breast cancer gene BRCA1 and in some families it throws up a cluster of ovarian cancers with a few breast cancers."

Joanna said she was determined to raise profile of the hereditary form of the disease so that other women did not fail to take action until it was too late.

But she said it had so far proved difficult to get the medical profession to listen.

"If there was more general awareness both in the medical profession and general public of the subject then maybe other women and their families need not go through the ordeal we have had to endure for the last twelve months," she said.

Awareness campaign

The charity WellBeing is launching a campaign to raise awareness of ovarian cancer in March.

As well as promoting information about the disease, it hopes to raise at least £100,000 for research.

There are 7,000 cases of ovarian cancer diagnosed in the UK each year - and only 30% of women diagnosed will be alive in five years time.

It is the fourth most common cancer in British women and early detection is key to the successful treatment of the disease.

RELATED INTERNET LINKS
Helene Harris Memorial Trust
WellBeing
Cancer Research UK
Ovacome - UK Ovarian Cancer Support Network
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