Gynaecological cancers: Silent no longer

February 2016 Vol 16 (1)

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.

Ai Ling Tan iconYou 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).

Ai gynaeOvarian 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

Gynaecological cancer statistics

  • 1,063 women were diagnosed with gynaecological cancers in New Zealand in 2012. 
  • The most common diagnosis was uterine (513), ovarian (266) and cervical (166) cancers.
  • 394 women died of gynaecological cancers in New Zealand in 2012.
  • 175 died of ovarian cancer, 121 of uterine cancer and 56 of cervical cancer.
  • Ovarian is the fourth biggest killer of New Zealand women, with one woman dying every 48 hours from ovarian cancer (on average about 310 cases year and 200 deaths).
  • In comparison, in 2012 there were 3,025 women diagnosed with breast cancer and 617 deaths due to breast cancer.
  • In 2011 New Zealand’s five-year relative survival rates were: breast cancer (87%), cervical cancer (72%), ovarian cancer (39%) and uterine cancer (78.5%).
  • Gynaecological cancers make up approximately 10 per cent of all cancer cases and cancer deaths in New Zealand.

Sources:
Ministry of Health (2015) Cancer: New Registrations and Deaths for 2012
Ministry of Health (2015) Cancer Patient Survival (1994 to 2011)
New Zealand Gynaecological Cancer Foundation

BEAT ovarian cancer

B is for Bloating (it is persistent and doesn’t come and go)

E is for Eating (difficulty eating and feeling full more quickly)

A is for Abdominal (and pelvic pain you feel most days)

T is for Talking (tell your GP)


Ai Obesity Womb Cancer graphic


Symptoms of gynaecological cancers

NOTE:

Having the symptoms below doesn’t mean you have or will get cancer – but it is important to consult your GP or NP.

  • Bleeding following menopause is NOT normal
  • Bleeding after sexual intercourse is NOT normal
  • If, after visiting your GP or NP, the symptoms continue or worsen, it is important to return and inform them of this.

Ovarian cancer

If you have the symptoms below and these symptoms persist on most days for two weeks or more, see your GP or NP.

Most frequent symptoms:

  • Persistent pelvic and abdominal pain
  • Increased abdominal size/persistent bloating – not bloating that comes and goes
  • Difficulty eating and feeling full quickly.

Sometimes you may experience these symptoms on their own or at the same time:

  • Change in bowel habits
  • Extreme tiredness
  • Urinary symptoms
  • Back pain.

N.B. See http://bit.ly/1KQrjCd for downloadable ovarian cancer symptom diary.

There is a genetic link to some ovarian cancers so if there are two or more cases of ovarian or breast cancer in your close family, seek advice from your doctor. For more information, visit the Gift of Knowledge website.

Uterine cancer
(including endometrial cancer)

If you have any one of these symptoms, please see your GP or NP.

  • Abnormal bleeding
  • Bleeding after the menopause
  • Bleeding between periods
  • Heavier periods than normal.
  • Symptoms of gynaecological cancers
  • Abnormal discharge
  • More than normal or strong smelling.

Cervical cancer

If you have any one of these symptoms, please see your GP or NP.

  • As with uterine cancer (see above)
  • Painful sex
  • Bleeding after sex.

Vaginal and vulval cancer

If you have any one of these symptoms, please see your GP or NP.

  • Vulval itching, soreness
  • Obvious change in colour of the vulval skin
  • A noticeable lump.

Source: Symptoms reproduced with thanks from the New Zealand Gynaecological Cancer Foundation’s website: http://bit.ly/1Slll4p

Risk reduction

Some steps to reduce the risk of the following:

Cervical cancer

  • Practice safe sex (ie, use condoms to reduce exposure to HPV virus that can cause cervical cancer).
  • Encourage uptake of free HPV vaccination for young women up to 20 years old and consider vaccination of young men also. (Vaccination can also help protect against vaginal and vulval cancer.)
  • Have a three-yearly cervical smear test from the age of 20 to help prevent cervical cancer.
    (Note: a smear test will NOT detect or protect against other gynaecological cancers).

 All gynaecological cancers

  • Be smokefree.
  • Keep a healthy weight: being overweight can increase risk of some gynaecological cancers, particularly endometrial.

Source: Adapted from the New Zealand Gynaecological Cancer website http://bit.ly/1SSjgfY

 

Further information

All gynaecological cancers

New Zealand Gynaecological Cancer Foundation
Aims to inform and educate community about gynaecological cancers with the aim of increasing survival rates. Has information on symptoms, statistics and personal stories and resources for health professionals. www.nzgcf.org.nz

Ovarian
Gift of Knowledge 
Registered charity focused on raising awareness and reducing incidence in 
New Zealand of genetic breast and ovarian cancer. www.giftofknowledge.co.nz

Ovarian Cancer Australia’s Symptom Diary
Downloadable tool that women can use to track and record four common ovarian cancer symptoms (pelvic abdominal pain, increased abdomen size/bloating, urinary frequency/urgency and feeling full after eating a small amount) over four weeks. http://bit.ly/1KQrjCd

Uterine cancer (including endometrial)
Cancer Research UK 
Blog published in November 2015 on links between obesity and some cancers, including the ‘oestrogen connection’ between obesity and increased risk of womb (endometrial) and breast cancers. http://bit.ly/1TvzJ98

Cervical
National Cervical Screening Programme. http://bit.ly/1SScOFH

HPV immunisation programme
Information on New Zealand’s Human Papillomavirus (HPV) immunisation programme for girls and young women up to 20 years old. http://bit.ly/1TvC83F

The New Zealand HPV Project
Information on genital HPV, its management and HPV vaccination, including of boys and young men. www.hpv.org.nz

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