More than 1,000 New Zealand women are diagnosed with gynaecological cancers every year and around 400 die of them – the majority from ovarian cancer. Nursing Review seeks to raise awareness of this female-only group of cancers, including why labelling ovarian cancer the ‘silent killer’ is not helpful, what obesity has to do with endometrial cancer, and how a vaccine can save lives. FIONA CASSIE reports.

You can rarely get through the supermarket aisles or glance through a glossy magazine without coming across a Pink Ribbon promotion or something to do with breast cancer.

But when it comes to the other ‘feminine’ cancers – those that begin in women’s wombs, ovaries, cervixes or vulvas – we see or hear much less.

This may partly be because breast cancer is much more common – roughly 3,000 diagnoses in New Zealand each year, compared with around 1,000 for the five main gynaecological cancers combined, and it may also be because breasts are more socially acceptable to discuss than ‘down there’. A survey last year by British gynaecological cancer research fund The Eve Appeal found that 39 per cent of women believe there is a greater stigma around gynaecological cancers than other types of cancer.

The lower profile of gynaecological cancers may also, sadly, be because there are fewer survivors to advocate for greater awareness. The most deadly of the gynaecological cancers – ovarian cancer – has a five-year survival rate of 40–50 per cent, compared with closer to 90 per cent for breast cancer.

The New Zealand Gynaecological Cancer Foundation was founded in 2006 with one of its major aims being to help raise awareness of the signs and symptoms of gynaecological cancer so that more women’s cancers are detected earlier and more lives are saved.

The longest-serving member of the Foundation’s board of trustees is Dr Ai Ling Tan, one of the country’s handful of certified specialist gynaecology oncologists. Gynaecological oncologists first complete training as obstetrics and gynaecology specialists and then do an additional three years of sub-specialty training focusing mainly on the specialist surgery required but also covering all aspects of the diagnosis and care of women with gynaecological cancers.

A major part of Auckland-based Tan’s work – and her counterparts in Auckland, Christchurch and Wellington and their multidisciplinary teams, including gynaecological cancer nurse specialists – is working with the, on average, about 300 new cases a year of ovarian cancer and 500 or so uterine (mostly endometrial) cancers.

New Zealand currently has seven or eight gynaecological oncologists, five of whom have RANZCOG certification, and it is estimated that we need at least 11. There is also a shortage of gynaecological cancer nurse specialists, who have a core role in the patient’s journey.

The not so ‘silent’ disease

When people do talk about ovarian cancer, it is often referred to as the ‘silent killer’.

It was historically given this lethal label as the symptoms were not thought to emerge until the chance of cure was poor.

It is true that in the majority of ovarian cancer cases there is no disease-specific early warning sign, like a breast lump or abnormal bleeding, and no screening programme like there is for breast and cervical cancer. So by the time most women are diagnosed with ovarian cancer it is often a stage III cancer and has spread throughout the abdominal cavity.

But in recent decades – as treatment improved and evidence grew of consistent, though non-specific, symptoms that could lead to earlier diagnosis – there has been a backlash against the ‘silent killer’ metaphor. In 2007 the American Cancer Society, the Gynecologic Cancer Foundation, and the Society of Gynecologic Oncologists announced for the first time a national consensus around the early signs of ovarian cancer and a similar consensus was released in the UK in 2008. At the same time, the American Cancer Society disassociated itself with the term ‘silent killer’ for ovarian cancer, saying it was “a catchy phrase” but it was wrong.

Ai Ling Tan agrees, saying people call it the silent disease “but in actual fact it is not that silent”.

She says the research from Australia and the US shows many women who present with ovarian cancer have had symptoms for more than six months. Their symptoms include feeling consistently bloated, having difficulty eating/feeling easily full and persistent pelvic and abdominal pain (see also sidebar). The symptoms may be non-specific, but if they are new, persistent and worsening, women should talk to their GP or NP.

“Most women when I sit and talk to them will say that they had A, B, C or D symptom but thought it was due to menopause or something else.”

Tan believes greater awareness of ovarian cancer symptoms could see more women diagnosed earlier, along with women being persistent in seeking answers if the symptoms continue or worsen. “If the GP doesn’t investigate then ask again or get a second opinion.”

About one in 10 ovarian cancers are genetic cancers. Tan says while genetic cancers make up a small proportion of ovarian cancers, it is a proportion in which women can be proactive. A mutation, particularly in the BRCA1 gene, but also in the BRCA2 gene, is associated with an increased risk of ovarian and breast cancers.

The most well-known example is Angelina Jolie, whose mother and grandmother both died of ovarian cancer and her aunt of breast cancer. After testing positive for the BRCA1 gene, Jolie first underwent a prophylactic mastectomy and then the removal of her ovaries and fallopian tubes.

In New Zealand it is advised that if there are two or more cases of breast or ovarian cancer in a woman’s close family then women should seek advice from their doctor (see sidebar p.22 for link to Gift of Knowledge website for more information).

Ovarian cancer treatment

The most common ovarian cancer is epithelial cancer, which Tan says can have two disease pathways.

Some women present early (stage I or II) with a lump, but the majority present later (stage III) with widespread disease within the abdomen. The later presentation cancers require surgery to not only remove the ovaries and uterus but also ‘debulking’ surgery to remove as much of the tumour tissue as possible from within the abdominal cavity. The surgery is usually followed by a course of chemotherapy.

Tan says the “major, major surgery” required can take between four and seven hours and the research data indicates that women with ovarian cancer operated on by gynaecological oncologists have increased survival rates. She says this is because of the specialist surgery required, the gynaecological oncologists’ understanding of the total disease, and the fact that they work as part of a multidisciplinary team, including medical oncologists, pathologists, radiologists and specialist nurses.

Christchurch gynaecological oncologist
Dr Bryony Simcock was quoted last year in The Specialist, the Association of Salaried Medical Specialists’ magazine, saying “gynaecological oncology in New Zealand provides a world class service in less than world class conditions”.

The five-year survival rate for all ovarian cancers has been improving, with Tan saying the survival rate for early stage ovarian cancers is about 80–90 per cent and for stage III, which is what about 75 per cent of women present with, the survival rate is about 40-50 per cent.

Don’t ignore abnormal bleeding

The most common gynaecological cancer is endometrial cancer – that is, cancer of the lining of the womb.

Unlike ovarian cancer, more women are diagnosed in early stage endometrial cancer because they present with abnormal bleeding. Also unlike ovarian cancer, where the vast majority of cases occur in women aged 45 or older, currently around half of the endometrial cancer diagnoses are in women under 65.

The earlier diagnosis also means higher survival rates, with New Zealand’s latest cancer survival statistics showing a five-year survival rate of 78.5 per cent for uterine cancers in general. (Endometrial cancer makes up the majority of uterine or womb cancers, with the other forms of uterine cancer being more rare).

But Tan says greater awareness is still needed amongst women in general about what is abnormal bleeding (see symptoms sidebar).

“My big message is to tell women that if you have any bleeding after menopause – that is not normal.”

“One of my major hobby horses is women who are post-menopausal who think bleeding after menopause is normal,” says Tan. She says unfortunately there are a lot of women out there who think that it is. “My big message is to tell women that if you have any bleeding after menopause – that is not normal.”

Tan says nurses can play a huge part in promoting awareness of gynaecological symptoms, like abnormal bleeding, when they work with female patients – particularly in general practices but also other settings.

“I always tell the practice nurses I talk to that they have a fantastic opportunity for education, promoting awareness and responding to concerns that could turn out to save someone’s life,” says Tan. “Because a woman might not be telling the GP that she is having post-menopausal bleeding as she thinks it’s embarrassing – particularly an older woman. They usually have a much better rapport with nurses as they feel more comfortable with them.”

Obesity a risk factor

Obesity is a known risk factor for endometrial cancer, which Tan says is an important link as
New Zealand is starting to see more cases.

The Cancer Research UK website, in a posting from late last year, says studies show an increased risk of breast and womb cancer in women who are overweight or obese after menopause. It quotes Professor Martin Wiseman of the World Cancer Research Fund saying that he is in no doubt that oestrogen made by fat cells is a leading culprit in post-menopausal breast and womb cancer as too much oestrogen can encourage breast and womb cells to “keep dividing when they shouldn’t be”.

Tan agrees there is good biochemical data about the impact of obesity on hormones like oestrogen, which impact on the lining of the womb. She says studies have also shown that unless overweight women who have been treated and cured for endometrial cancer lose weight and maintain a healthy lifestyle, they risk dying within five to 10 years of a cardiovascular event.

“In America, they tell every woman who has had endometrial cancer, and who is also overweight, that they need to lose weight,” says Tan, who believes it is important that women are informed of the relationship between obesity and endometrial cancer.

See also related gynaecological cancer articles: The cancer that screening and vaccine can prevent  and  We need to talk more about vulvas