29 August 2025
Many women with gynecological cancer feel alone and ashamed. Gynca's wants to change that. The non-profit organization gives them a voice and stands up for their interests. Chair Anne De Middelaer looks back on the past five years — and ahead to the future. “There is still a lot of work to be done, but we are on the right track.”
Between Christmas and New Year’s Eve 2018, doctors discovered a tumor in Anne De Middelaer’s cervix. Initially, they feared it was stage 4, but in early 2019, it turned out to be “only” stage 3. “A difference that significantly increased my chances of survival,” Anne says.
That relative relief was quickly followed by another blow: further tests revealed a second primary tumor. “I also had thyroid cancer,” Anne explains.
“I told myself, ‘If I can get through this, I’ll walk to Compostela and raise money for an organization that supports women with cervical cancer.’”
The pilgrimage hasn’t happened — yet — and Anne couldn’t find such an organization. “I found one association, but it didn’t accept donations. There was also a private Facebook group for women with gynecological cancer, but that was all.”
During her online search, Anne connected with Maria Papageorgiou, a Greek uterine cancer survivor who was raising awareness about gynecological cancers. On September 20, 2020, Maria posted a photo of herself on social media wearing a World GO Day (World Gynecologic Oncology Day) T-shirt.
“I shared her post in our private Facebook group and immediately received questions from four women: could you get T-shirts like that for us?” Anne recalls.
Through Maria, she got in touch with ENGAGe, the European Network of Gynecological Cancer Advocacy Groups. “I didn’t ask for T-shirts, but I told them our story. Two days later, five T-shirts and a whole lot of campaign material were delivered to me.”
Anne personally brought the T-shirts to the women in the group and asked them a question: “I want to set up a non-profit organization. Would you like to join?” All four said yes.
As for the organization’s mission, “We didn’t want to decide that ourselves,” Anne explains. “We asked the 300 to 350 women in the Facebook group what they felt the focus should be.”
“For most, it was clear: raising awareness about gynecological cancers, the importance of preventive screening, and they wanted someone to stand up for them. That became our first mission.”
“Our second mission is to support women and their loved ones in their search for reliable information about their disease and the best care. And thirdly, we are committed to connecting women who have gone through similar experiences, although that is not one of Gynca’s core tasks.”
On December 21, 2020, Anne, Caroline, Eva, Kathleen, and Mariska officially founded the non-profit organization. Annelies, Patricia, Sabine, and Melissa have since joined the team, while Eva and Kathleen have sadly passed away — a loss that is still deeply felt.
From the outset, Gynca’s took a professional approach. “None of us had any experience in advocacy. That’s why we immediately enrolled in a basic training course at Kom Op Tegen Kanker, followed by further training at the Patient Expert Center.”
The hard work paid off. Gynca’s made an impression and was soon invited to round tables and other events. “That helped us get to know the other stakeholders in the story — and they got to know us,” says Anne.
“It was during a round table discussion about HPV that I met Pia [Cox, Executive Director of All.Can Belgium, ed.]. One thing led to another, and Gynca’s is now a member of All.Can Belgium.”
In February of this year, the non-profit organized a round table in the federal parliament on HPV-related cancers. Together with several other stakeholders, Gynca’s proposed a roadmap to eradicate HPV-related cancers in Belgium by 2030.
Politicians Kathleen Depoorter (N-VA) and Julie Taton (MR) supported the initiative. “Their support was very important,” Anne says gratefully.
“The round table in February wasn’t the end of the story. Since then, we’ve already had consultations with the office of Flemish Minister of Welfare Caroline Gennez, and this month [August, ed.], with the office of her Walloon counterpart Yves Coppieters. The government is clearly taking the fight against HPV-related cancers seriously.”
‘In French-speaking Belgium, women with gynecological cancers currently have no association to represent them.’
Where does Anne hope Gynca’s will be in five years?
“We want to be known throughout Belgium. In French-speaking Belgium, women with gynecological cancers currently have no association to represent them. We want to fill that gap. That’s why we’ll soon be launching a bilingual website and actively campaigning in French-speaking regions.”
“What else do I hope for? That we’ll have one or more people on staff to ensure the continuity of our organization, that we’ll have our own location, that doctors will increasingly contact us spontaneously to ask for our input — you name it. We can dream, can’t we?”
Something tells us it won’t remain just a dream.
Anne De Middelaer notes that various taboos still surround gynecological cancers. “We need everyone to help break them down.”
“Because these cancers affect intimate parts of the body, many women feel a sense of embarrassment,” Anne explains. “We’re talking about our most intimate parts as women. That’s not easy to discuss.”
Stigma is also fueled by misunderstandings. Take HPV-related gynecological cancers, for example. “There’s still a perception that HPV is contracted through promiscuous sexual behavior, which isn’t necessarily true,” Anne says. “80 to 90% of people will contract the virus at some point. Even someone who has only had one partner can become infected.”
Victim blaming
“Nevertheless, some women with HPV-related cancer wonder what they did ‘wrong.’ Others fear being stigmatized and blamed — ‘because they got the virus through their behavior.’”
But misconceptions aren’t limited to HPV. “Correlations are sometimes too quickly presented as causal links. ‘Do you have ovarian cancer? Then it’s because you haven’t given birth.’ ‘Do you have uterine cancer? Then it’s because you’re obese.’ These simplistic messages encourage victim blaming, making women afraid to say they have cancer.”
And it’s not just about talking. Many women are also afraid to seek care. “And who wouldn’t be?” says Anne.
“It starts even before treatment. You have to lie down on a table with your buttocks exposed, surrounded by four or five people. And the therapy hasn’t even started yet. With brachytherapy, for example, they insert a tube into your lower body to irradiate you. You then have to lie still for 72 hours, receiving ten minutes of radiation every hour. At times like that, you stop feeling human. Fortunately, new technologies are emerging that make the process much faster.”
Self-esteem hits rock-bottom
“The side effects of many treatments are also frightening. You may no longer be able to have pain-free sex with your partner. In many cases, the ovaries are damaged, causing menopause — even at age 25. In some cases, you need an ostomy — a surgically created opening in the abdomen (called a stoma) that allows waste to exit into a bag. And I could go on.”
“I don’t need to explain why your self-esteem plummets,” says Anne. “You feel humiliated, even though that’s obviously not the intention of the therapy.”
Despite these difficult challenges, Anne remains hopeful. “Self-tests, like those for HPV, lower the threshold for screening. New, less invasive treatment techniques are being developed. Hospitals are increasingly paying attention to mental well-being and sexuality. And as patients, we’re being heard more and more — not only by healthcare providers, but also by policymakers.”
“We still have a long way to go, but I believe we’ll get there. Twenty years ago, breast cancer was surrounded by a huge taboo. That hasn’t entirely disappeared, but the threshold for talking about it or seeking help is much lower now. We’ll achieve the same for gynecological cancers.”
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