Gynaecological cancers account for 10% of all cancer diagnoses in New Zealand and ovarian cancer accounts for the most fatalities of all of them.
In 2013 the Ministry of Health recorded 290 new cases of ovarian cancer and 178 deaths. This means females are more likely to die of ovarian cancer than melanoma, though most have no idea of the symptoms.
Unlike melanoma there are no publicly funded education campaigns. And though the cost of an internal ultrasound and CA-125 blood test, is similar to that of a mammogram, anecdotally many women with symptoms of ovarian cancer face significant barriers to accessing the tests required to make a diagnosis.
Jane Ludemann repeatedly saw her GP for over two years with characteristic symptoms of ovarian cancer and was told testing was unnecessary until she was admitted acutely for emergency surgery owing to complications from her cancer. She was diagnosed with stage 2B low-grade serous carcinoma (LGSC).
But even when the necessary tests are done there is no guarantee of timely treatment. Whangarei woman Melanie Schonewille bravely shared her story twice this year (https://www.stuff.co.nz/national/health/110606249/kiwi-women-fighting-for-early-ovarian-cancer-diagnosis-and-access-to-drugs and https://www.nzherald.co.nz/nz/news/article.cfm?c_id=1&objectid=12228383). She paid privately for the tests to detect her low-grade serous carcinoma yet still had to wait over four months for a gynaecological oncology specialist’s appointment. By the time she had surgery her cancer was stage 4.(Update 14 September 2019: It is with much sadness that we hear of the passing of Melanie. She was an incredible woman who was so full of life, despite her illness. Our thoughts are with her family.)
Low-grade serous carcinoma (LGSC) is a unique cancer which accounts for 3-8% of all ovarian cancer diagnoses. Though ovarian cancer is typically thought of as an older women’s disease, women with low-grade serous carcinoma are often young. It is typically resistant to chemotherapy and with current treatments at least 85% of women will have their cancer come back. The median survival is less than 9 years.
This is too short for women like Jane Ludemann, who was diagnosed in 2017 at the age of 32, with stage 2B which in many other cancers would be considered an early diagnosis. A lack of effective medical treatments means her cancer is considered frequently incurable. Together with her workmates from Stewart Caithness Gray Optometrists, they walked and ran the Dunedin Marathon to raise funds for research. At the time of writing their two fundraisers have raised over $5000 which is a very worthy effort.
Their fundraising is going towards, what we believe is, the second ever low-grade serous carcinoma specific research grant in the world. We recently helped fund the first LGSC research grant this year, in conjunction with our partners Graci.
Targeted funding is absolutely critical to improving survival in these women. Rare cancers such as LGSC account for half of all cancer deaths, but according to Australian data receive just 13.5% of all research funding. Research grants are more likely to go to cancers which affect larger numbers of people; researchers who have already secured part funding; or research in an area which has already received a lot of attention. This creates a vicious cycle of chronic underfunding for rare cancers.
Though survival for many cancers has improved dramatically in the past few decades, LGSC has been left behind. Targeted research funding helps researchers take advantage of the knowledge accumulated from general cancer research, and apply it to LGSC. We can’t alter the number of women who develop LGSC, but we can provide funding to make it easier for researchers to obtain external grants. This will result in research that will make it easier to get further grants in the future to improve womens survival.
When we attended the Inaugural LGSC symposium in Miami earlier this year, we heard the same thing over and over again. The techniques and treatments to improve significantly improve survival in women with low-grade serous carcinoma exist, but the research funding does not. Yet the median survival of women with LGSC is long enough that research could benefit not just women diagnosed in the future, but many living with the disease. If we act now.
Cure Our Ovarian Cancer is committed to making our research dollar go as far as possible, which is why to date, we have privately funded our administrative costs. Apart from a small transaction fee for credit card donations, 100% of every dollar we receive goes to research.
This September is OUR September. Let’s use it to make a difference to women with LGSC.