A woman’s reproductive system has been called many names, yet still remains a taboo topic.
For many women the words vagina, vulva, uterus, cervix and ovary are not spoken. Rather, euphemisms like “down there”, or “down below” are used. It’s time to start talking about ‘The box’.
Talking about our genitalia, and particularly women’s genitalia, is culturally taboo. There are a lot of people who wrongly believe that being diagnosed with a gynaecological cancer means a woman is ‘loose’ or ‘dirty’.
It’s hard to start a conversation about your gynaecological health in the face of such taboos and critical judgment. This discomfort is costing the lives of our mothers, daughters, sisters and friends.
This year 5500 women will be diagnosed with a gynaecological cancer. In the past 25 years overall cancer survival in Australia improved by 19%, but gynaecological cancer survival improved by just 7%.
The Australia New Zealand Gynaecological Oncology Group (ANZGOG) is conducting and promoting cooperative clinical trials and multidisciplinary research to improve the lives of women who have gynaecological cancer.
September is International Gynaecological Cancer Awareness Month, and an important opportunity to raise awareness of gynaecological cancers. ANZGOG’s Save the Box campaign aims to raise awareness and funds for gynaecological cancer research.
Gynaecological cancer symptoms
There are seven types of gynaecological cancer: endometrial, ovarian, cervical, vaginal, vulvar, and two rare pregnancy-related cancers.
The symptoms of gynaecological cancer are vague but include:
- Abdominal bloating
- Feeling full
- Increased frequency in urination or bowel movements
- Menstrual irregularities
- Itching, burning or soreness
- Lumps, sores or wart-like growths
- Pain during sexual intercourse
- Bleeding after menopause
If a woman is experiencing any of these symptoms and they are unusual for her or persistent, she should see her GP. If she is diagnosed with a gynaecological cancer, she should be referred to a Gynaecological Oncologist – see the Australian Society for Gynaecologic Oncologists for a full directory. Statistics indicate that women diagnosed with a gynaecological cancer have the best survival outcomes if they are referred to a gynaecological oncologist and managed as part of a multidisciplinary team.
Perhaps because of the taboos, and also because of the vagueness of some of the symptoms, it can take several visits to the GP before a diagnosis of a gynaecological cancer is suspected and appropriate referral made. Many women who have vulval or vaginal cancers have had symptoms that they’ve been embarrassed about and this has delayed them going to the GP.
Current trends in gynaecological cancer
We are seeing an increased incidence of endometrial cancer as a result of the growing obesity epidemic.
Endometrial cancer is a preventable disease in 4 out of 10 patients through exercise or diet. Women can be referred by their GP’s via an Enhanced Primary Care (EPC) referral to an ESSA accredited exercise physiologist for 5 Medicare reimbursed sessions.
A woman diagnosed with ovarian cancer has only a 40% chance of surviving five years from her diagnosis. Survival has not improved in decades and lags well behind breast (89% survival five years from diagnosis) and other cancers.
New genomic knowledge has radically changed the way we view ovarian cancer. The disease is now classified into seven molecular subtypes, some of which are very rare. We now understand why a one size-fits-all approach to treatment must and can change.
The ANZGOG Ovarian Cancer Alliance for Signal-Seeking Research (OASIS) initiative has been created to catalyse and fund research into improved treatments for ovarian cancer that target the seven molecular subtypes.
On a positive note, with the introduction of the cervical cancer vaccine, the incidence of cervical cancer is predicted to fall dramatically, although this may not be evident for 10 to 20 years. The new cervical screening program, with the emphasis on HPV testing, is also predicted to reduce the incidence of cervical cancer..
Government funding of research is increasingly competitive, meaning that early career researchers, pilot studies, and research into rarer diseases like gynaecological cancers are missing out.
As a non-profit organisation, ANZGOG continues to struggle with funding. Clinical trials are costly and this is the major barrier we face in opening new trials and expanding our clinical trial portfolio.
Why does research matter? Because research leads to improved outcomes through better treatments, better survival and better quality of life.
We’ve seen tremendous advances in the survival rates of women who have breast cancer and many of those improvements are the result of research. Virtually every advance in cancer survival has been made on the back of clinical trials.
The current growth in the development and use of targeted therapies will have a substantial impact. The upcoming challenge will be how to incorporate these drugs effectively into the treatment for ovarian cancer (and perhaps other cancers in the future) in a way that is of greatest benefit to patients.
ANZGOG’s Survivors Teaching Students® – Saving Women’s Lives program brings the faces and voices of ovarian cancer survivors and their caregivers into the classrooms of medical and nursing students. Survivors, through their own personal experiences, are in a unique position to help students become more sensitive to the risk factors associated with ovarian cancer and symptoms of ovarian cancer. Our goal is to increase the number of health care providers who recognise the risk factors and symptoms of ovarian cancer, in the hope that women can be diagnosed earlier, when cure rates are higher.
While many endometrial cancers are cured with surgery alone, there are plenty of unanswered questions about the extent of surgery needed for early endometrial cancer patients, and what additional treatment may be best for those with more advanced disease. ANZGOG is conducting a surgical trial, STATEC, to try to determine the extent of surgery that is best for patients with apparent early stage, but high risk, endometrial cancer.
The improvements in breast cancer survival rates are the shining example of what can happen when we openly talk about the problems, and provide the funds needed to save lives.
‘Save the Box’ is fundraising for gynaecological cancer research conducted by the Australia New Zealand Gynaecological Oncology Group (ANZGOG). Find out more or make a donation today at https://www.savethebox.org.au/
Associate Professor Alison Brand
Alison is Chair of the Australia New Zealand Gynaecological Oncology Group and Director of Gynaecologic Oncology at Westmead Hospital