Nat plan to fight gynaecological cancers

09/09/2020

National has announced a policy to address late diagnosis and poor survival rates for women with gynaecological cancers:

National is pledging $20 million to protect women from gynaecological cancer through greater awareness, improved clinical guidelines, increased testing and greater access to clinical trials, National Party Leader Judith Collins and National’s spokesperson for Rural Communities and Women Barbara Kuriger say.

Every year in New Zealand more than 1000 women are diagnosed with, and over 475 die, from gynaecological cancer.

This investment is alongside National’s commitment to fund an independent Cancer Agency and set up a $200 million fund dedicated to cancer drugs.

“As an ambassador for the New Zealand Gynaecological Cancer Foundation this has special significance to me. Too many women are going untested and undiagnosed at the moment,” Ms Collins says.

“The sad reality is that most New Zealand families will be affected by cancer. Cancer doesn’t discriminate when it chooses its victims and people shouldn’t have reduced access to treatment just because they live in the country.

“The signs and symptoms of gynaecological cancer are difficult to determine so we will be promoting even greater awareness so women can get themselves diagnosed as soon as possible. National will provide a funding boost to awareness campaigns to ensure this happens.

“We will work with health professionals to maintain up-to-date clinical guidelines that give them the resources to identify gynaecological cancer earlier and make the best decisions around diagnosis and referring women for testing.”

This is just the first announcement in our strong plan to provide better health outcomes for rural communities,” Ms Kuriger says.

“Farming is a stressful and sometimes isolating profession. It can be all too easy to neglect your personal health needs when you’re running a farm, so we want to make care easy and accessible.

“The increased awareness and improved clinical guidelines will lead to more women being tested, and we will provide increased funding to ensure every woman in New Zealand who needs a test is given one.

“National is focused on providing better outcomes closer to home for Kiwi families and communities. This funding will save lives and ensure New Zealand women are getting the care they deserve.”

The Q&A on gynaecological cancers says:

How many women are diagnosed with Gynaecological cancer at the moment?
• Currently, around 1,000 women a year are diagnosed with one of the five gynaecological cancers each year in New Zealand.
How many women die from Gynaecological cancer at the moment?
• Currently, around 475 women are lost to gynaecological cancer each year in New Zealand.
How many more tests are needed?
• Because too many women aren’t aware of the symptoms of gynaecological cancer, and so aren’t presenting for tests, we simply don’t know the size of the unmet need. That’s why our first priority is to increase awareness.
• The funding provided will ensure that the additional demand for tests can be met. If more women are getting tested, and diagnosed earlier, then we will consider this policy a success.
Is this enough?
• It’s not about the amount of money, it’s about spending it right. We know that the evidence says that awareness is an issue and so that’s the issue we want to address.
What kind of tests will be funded?
• There are five different kinds of gynaecological cancer and there are various different tests that can be used for diagnosis. For ovarian cancer this includes ultrasound and the CA-125 blood test.
• We don’t want to pre-empt the development of updated clinical guidelines by determining what kinds of tests are needed, or how many more women will be receiving them, but we do want to ensure that every woman has timely access to the tests they need.
How many more women will be tested as a result of this?
• It’s hard to say because the issue is that too many women are going untested and undiagnosed at the moment.
• The important thing is that women are aware of the symptoms of gynaecological cancer, that they are consulting their GPs in a timely manner, and that where appropriate GPs are referring women for testing.
• National will ensure that the money for increased testing is available, as this is ultimately about saving lives.

Full details are here.

My daughter has low grade serous ovarian cancer, a rare form of the disease which is frequently incurable.

She had been to doctors for two years with symptoms before she was diagnosed.

Her story is far too common because too many women don’t know the symptoms, it’s difficult to diagnose and like four of the five different gynaecological cancers and only cervical cancer it can’t be detected by a smear.

This policy will improve awareness, educate health professionals, increase testing and access to clinical trials.

Six New Zealand women are diagnosed with ovarian cancer each week and four New Zealand women die of the disease each week.

Unlike breast cancer which has much better survival rates, the prognosis for women with ovarian cancer hasn’t improved in decades.

One reason for that is that women with ovarian cancer are often diagnosed late and are too ill, or don’t survive, to advocate.

That isn’t an argument to reduce funding for breast cancer initiatives. It is a reason to put a much greater effort into raising awareness, testing and improving access to clinical trials, which this policy aims to do so that women with ovarian, and other gynaecological cancers have the much better chance of survival that women with breast cancer do.


Kiwi charity secures New York Times Square billboard for World Ovarian Cancer Day

08/05/2020

A media release from Cure Our Ovarian Cancer:

Friday May 8th is World Ovarian Cancer Day, and a young New Zealand woman, Jane Ludemann, has instigated a huge billboard campaign in New York’s Times Square to raise awareness and funding support for the often overlooked deadly disease.

“This campaign is about ensuring women living with ovarian cancer the world over experience hope for a better future. At times it can feel like we’re alone, almost as if we’re in an empty Times Square. That is why we need more eyes on this disease and more investment in research and hopefully we’re making that point with our new campaign,” says Ludemann.

In 2018 a young Canadian model, Elly Mayday, stood in Times Square in her teal underwear to raise awareness and funding for ovarian cancer research. She died of the disease ten months later but her efforts inspired Brianna Wagner to stand in her place in 2019. In 2020, the research charity, Cure Our Ovarian Cancer, planned to mark the day again with an organised fundraising event that involved sixty ovarian cancer sufferers from around the globe gathering in Times Square. 

Unfortunately Covid-19 restrictions made this impossible but Jane, also an ovarian cancer sufferer and founder of Cure Our Ovarian Cancer, was determined to continue the campaign and went on to secure one of the largest billboard’s in Times Square. Ludemann enlisted creative and digital agency Topham Guerin to develop the campaign to highlight the need for crucial research into curing the dangerous cancer, and honour the contribution of Elly Mayday.

Cure Our Ovarian Cancer is a New Zealand based charity dedicated to improving the survival of women with low-grade serous carcinoma. Founded in 2018, they raise funds directly, and through partner organisations in the United States, Canada, the United Kingdom, Australia and New Zealand. They want to see the survival rates of Low-Grade Serous Carcinoma (LGSC) reach those of breast cancer.

About Ovarian Cancer

Ovarian Cancer is the most lethal of all women’s’ cancers, the death rate being double that of breast cancer and it is the seventh most common cancer worldwide. Every year more than 300,000 women are diagnosed with the disease – about the daily number of people that pass through Time Square each day (330,000) – and 180,000 women will die from it. By 2024 the incidence of ovarian cancer will increase by 47% and the number of deaths each year will rise to 293,000 it is predicted. 

Background – Low-Grade Serous Carcinoma (LGSC)

Jane Ludemann was diagnosed with LGSC in 2017. LGSC is an often incurable subtype of ovarian cancer that disproportionately affects young women. Half are diagnosed in their 20s, 30s and 40s and the initial treatment usually consists of menopause inducing surgery, chemotherapy and/or hormone inhibitors.

In 1997 research showed the addition of hormone inhibitors like Letrozole could double the time it takes for a woman’s cancer to return. Letrozole received FDA approval for breast cancer in 1998.

“A 20 year delay in cancer treatments is unacceptable” says Ludemann. 

She was shocked to discover fewer research papers per year were being published on her ovarian cancer per year than on breast cancer papers per day.

“It was hard to believe just how little research was happening anywhere in the world for the cancer trying to kill me.”  

In 2018 she founded research charity Cure Our Ovarian Cancer to raise crucial funds to help researchers find treatments to improve survival.

“It’s a horrible, horrible silent killer and being diagnosed feels really isolating. But, despite what they are going through, we are an amazing community and this is what drives Cure Our Ovarian Cancer.”

“It’s really hard at any age to get this diagnosis, harder still to be diagnosed when you’re in your 20s, 30s and 40s. Elly was really brave and was one of the first women to be really public about her journey, and other women diagnosed looked up to her,” Ludemann says. “This is why we wanted to honour her memory and generate a conversation around ovarian cancer research. It also helps other sufferers to know they are not alone when going through this.”

The theme of this year’s World Ovarian Cancer Day is powerful voices and while there won’t be many people in Times Square because of the lockdown the billboard will provide a powerful voice to raise awareness of the disease and the need for research funding.

The billboard will go live at 4pm New Zealand time (midnight in New York).

You will be able to see it here


Living under cancer sword

13/02/2020

When you’re pregnant you have  hopes and dreams for your babies and their futures, dreams you probably aren’t fully aware of unless you lose them.

Some of our dreams were dashed when our sons were diagnosed with degenerative brain disorders and died young, Tom aged 20 weeks, and Dan 10 days after his fifth birthday.

Life with the boys who had multiple disabilities and passed none of the developmental milestones wasn’t easy, nor was coming to terms with their deaths.

Many people who learn about Tom and Dan say they couldn’t cope if that happened to their children. I’d probably have thought the same until I had to. Then, the only alternative to coping was not coping and through necessity, I coped.

That doesn’t mean I always did it well. There were some very long nights and some very dark days; nights when I fell into bed exhausted by grief but couldn’t sleep, days when it felt like I was stuffed full of dark clouds and was ready to burst. But even at the very worst of times I had the love and support of my husband, wider family and friends, shining light against the darkness of despair.

And our sons, who could do so little, taught us so much: how blessed we are to have that support; that people are people regardless of what they can or cannot do and that ability isn’t a right it’s a privilege

Our response has also been governed by the knowledge that it would only compound the tragedy of our son’s difficult lives and early deaths if being bitter and twisted and focusing on what we’d lost stopped us appreciating and enjoying all we still had and could have.

And we still had their older sister who gave us the joys and challenges children provide.

None of those challenges were major until nearly three years ago when she was diagnosed with low grade serous ovarian carcinoma (LGSOC), a type of ovarian cancer that is frequently incurable.  Jane, at just 32 years old, was told with current treatments her life expectancy was likely to be only five to 15 years.

Ovarian cancer is the 5th most common cause of female cancer death in New Zealand. Yet we  knew almost nothing about the symptoms. For two years Jane was told by doctors her symptoms were not serious, right up until she required emergency surgery from cancer complications. You can read more about the symptoms here:

Not letting what we’ve lost with the lives and deaths of our sons, blind us to what we still have is, of course, easier in theory than practice and it has been harder still to focus positively in the wake of Jane’s diagnosis.

There’s been a lot of tears, a lot of prayers and a lot of swears. There are nights of restless sleep when I wake to find the nightmare is real, and days when I cry easily and often. But again we’ve got wonderful support from family and friends, and just as she gave me a reason to not just survive but live a full life when her brothers died all those years ago, Jane’s example is providing an inspiration for me now.

18 months after diagnosis and 8 weeks after breaking her leg skiing.

If it’s hard for me as a mother, how much harder must it be for her,  a young woman living under the cancer sword, facing what it’s already cut from her life, the pain of that and the knowledge that it could take so much more?

She could have sunk into depression and stayed there. She could have chosen to focus only on herself. Instead she is doing much, much more.

She is fighting not just for herself but for all the other women around the world who share her cancer, many of whom are young like her.

What will determine whether women like our daughter live or die is research. Rare cancers like Jane’s, account for almost half of all cancer deaths yet receive just 13.5% of research funding.  The limiting factor isn’t science, it’s the money for the scientists to study it that’s lacking.

When Jane was diagnosed there wasn’t any way to donate directly to her cancer anywhere in the world. She knew that had to change if she and other women were to survive. She liaised with doctors,  researchers and charities around the world and founded Cure Our Ovarian Cancer – a registered charitable trust, that facilitates donations for low-grade serous cancer research both in New Zealand, and internationally.

Jane spends most of her days connecting with women and researchers around the world, fundraising for research into her cancer. Through Cure Our Ovarian Cancer and it’s partner charities, she’s helped raise more than $200 000 in less than two years. And aside from a small payment fee, 100% of every dollar raised goes to research.

She’s humbled by the public’s generosity, but also overwhelmed by how far is left to go. Tens of millions are needed if change is to happen in time for her. But as Jane says, “How can I do nothing? Knowing that in 10, 20, 30 years time, women will continue to die in droves without research. You just have to try.”

We’re in awe of everything Jane is doing while living with this awful cancer. It’s heartbreaking but her example pushes us to do better every day.

As a family we are committed to helping in every way we can. We’ve funded three research projects in the US and NZ and continue to do what we can. But this problem is too big for one family to solve without help.

This is why we’re going public. Because our daughter,  and all the other women with this dreadful disease,  need your support.

Our message to you is simple. Please donate, please fundraise and please tell everyone you know about our incredible girl and this horrible cancer. Women’s lives are on the line.

Learn more: cureourovariancancer.org

Follow Cure Our Ovarian Cancer on Facebook and  Twitte and Instagram.

Jane’s personal blog is janehascancer.com


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