Ovarian cancer is the least survivable cancer for women in New Zealand and yet one of the most underfunded. For over a year advocates have been fighting for more funding, research, and better access to diagnosis, but to no avail.
Now, an Official Information Act request has revealed just why it’s so hard for some young women to get a diagnosis, with some DHBs refusing to refer them for an ultrasound.
Jane Ludemann, founder of Cure Our Ovarian Cancer, reached out to all DHBs to see their referral procedures but only heard back from 13 of them.
Out of the 13, only seven DHBs would accept a referral for someone younger than 45 with a normal CA-125 blood test and one month of symptoms.
“There are two ways of screening for ovarian cancer, one is a blood test called CA-125, that’s a tumour marker that’s specific to ovarian cancer. We know that in early stages of ovarian cancer the CA-125 can be completely normal so you have a screening test that doesn’t perform that well and that’s the concern,” obstetrician Dr Michelle Wise said.
Hence the better option is an ultrasound. It's still not 100% accurate but can offer more information.
The Hawke's Bay and Northland DHBs said they wouldn't accept the referral for an ultrasound for those under 45 with a normal blood test result even if the symptoms lasted three months and were worsening.
Mid Central DHB indicated they would accept the referral, but women have to wait up to five months for an appointment.
“That’s setting women up to fail because you’re not going to catch those ovarian cancers early if you’re making people wait so long to tick the boxes, and it’s not a medical rationale for that referral criteria – it’s a resourcing issue,” Ludemann said.
She started advocating for ovarian cancer when she got diagnosed at 32. It took her two years of multiple GP visits, specialist appointments and misdiagnoses for the doctors to finally tell her she has between five and 15 years of life left to live.
“I’ve made it five years and I’m lucky because about two-thirds of the women that were diagnosed when I was aren’t here anymore,” she said.
Of the women with ovarian cancer in New Zealand, one in eight are diagnosed before the age of 45 and, because of a lack of funding and research, it's unclear what treatment options are the best and whether or not they’ll even work.
Miracle Marsh is undergoing chemotherapy for ovarian cancer. The 27-year-old mother of two was one of the few women who was diagnosed at Stage 1 and that too was just within four months.
“I looked like I was ready to give birth and unfortunately, that wasn’t my case,” Marsh said. Unfortunately for her, she can’t have any more children due to undergoing a full hysterectomy.
“I always thought I was going to have that little girl, you know, I have two beautiful boys and I’m blessed, but there are wāhine out there that do not get that option,” she said.
Her symptoms at the time were so minuscule, she nearly dismissed them altogether.
“Fatigue, loss of appetite, a change in bowel habits, an urge to urinate, discomfort during sex. I had consistent bloating as well but out of all those symptoms, breathlessness is what got me to the doctors,” she said.
Both Marsh and Ludemann are part of a small group of women advocating for urgent change now and calling on greater awareness.
To put into perspective just how crucial funding, awareness, and research is to cancers, in 1970 the survival rate for ovarian cancer and prostate cancer were similar. Now, prostate cancers survival rates are over twice as good as ovarian cancer.
“Every 48 hours we lose a woman in New Zealand to ovarian cancer, and you’d think with such a deadly cancer there would be more awareness, more funding more treatment options more research,” Marsh said.
They want to see more information handed out to women when they get their pap smears; wider education around the symptoms and when to get checked; and better funding.
Wise agreed, adding, “I think the real solution is in funding more research. I mean, we’ve been researching this for decades and unfortunately, we still don’t have a good screening test."
A petition with over 7000 signatures was handed to Parliament in March last year with these requests, but there’s been no change.
More information on ovarian cancer or where to donate can be found at the Cure Our Ovarian Cancer and Talk Peach websites.
SHARE ME