The idea for the World Gynecologic Oncology Day project was sparked at an ENGAGe Patient Advocacy Seminar in Lyon, France. ENGAGe is the European Network of Gynecological Cancer Advocacy Groups. We were so happy to sit down last month with present ENGAGe Co-Chair Kim Hulscher, Past Co-Chair Ico Toth, and Co-Chair Elect Anne De Middelaer in an Instagram Live broadcast! They told us about ENGAGe and talked about some of their ongoing projects for gynecological cancer patients as well as their experiences as cervical cancer survivors. Read an excerpt below and catch the full interview on our Instagram Reels!
Icò Tòth
My name is Ico Toth and I'm the Past Co-Chair of ENGAGe. I'm also a cervical cancer survivor, and I have a foundation in Hungary, the Mallowflower Foundation, and we work for HPV prevention and for gynecological cancer.
Kim Hulscher
I am Kim Hulscher from the Netherlands. I'm also a cervical cancer survivor, and I'm right now the Co-Chair of ENGAGe. I'm from Sichting Olijf in the Netherlands, and we work with any type of gynecological cancers
Anne De Middelaer
Hi everyone. My name is Anne, and I am also a cervical cancer survivor. And I am the future Co-Chair for ENGAGe. I also am the president of the Belgium Association, Gynca's.
World Gynecologic Oncology Day
Could you tell me a little bit about what ENGAGe is?
Kim
ENGAGe stands for the European Network for Gynaecological Cancer Advocacy groups, which means for a network of around 80 different patient advocacy groups throughout Europe which are dealing with any type of gynecological cancer. We work together, we learn from each other, we inspire each other, and we have a lot of different projects we're working on. Ico, you can tell us a little bit about the quality-of-life project.
Icò
ENGAGe has a lot of projects, and I am honored to lead the quality-of-life project, which is very important. In the former time, quality of life issues were in the shadow because no one wanted to take care about that. Now it's changed, and we really want to highlight them. And in the quality-of-life project this year we have the topic of sexual health.
And of course for [quality of life] after gynecological cancer, we have the To My Soul project. Every Tuesday, we have something new on the social media of ENGAGe, sometimes the brochure or tips and tricks, questions, and every Tuesday has its own topic.
So every month has its own topic, and every Tuesday has its own topic. And we can follow the whole patient pathway, from the very beginning, from the symptoms through after treatments, palliative care and the others.
Kim
Quality of life is important. And I think it's that goes well with what we've been doing for about a year, which is that we're part of the ESGO guidelines as patients. Anne, you can tell more about it.
Anne
This is a new project. What is a guideline? A guideline is something like the word said, it's a document that it gives a guidance to all the doctors out there on how to treat a certain type of cancer in a certain way. So it means, like, for instance, if you have stage one of cervical cancer, the best way to treat it is done a certain way.
What we bring into this, the new thing, is really the patient perspective. So what we say is, okay, you have the radiologist who says this is the most important thing. You have the surgeon who says this is the most important thing, but the patient part is saying, okay, maybe we need a psychologist on that. Maybe we need additional movement or advice on our food that we need to take in.
So all those things so the perspective of us, what do we need, besides all that good expertise of the doctors, that is what we added in this in these guidelines, and it's also evidence based.
So we already know from different cancer types what we can prove is really an advantage for the patient.
Icò
Why is it so important to have these guidelines?
Anne
These guidelines are really taking into account all the latest clinical trials, all the latest proof what is best practice in that case. So for each and every step—whether or not it's taking the pictures, the scanning, from the diagnosis to the surgery—whatever is connected to the patient pathway during the disease or after the disease. Doctors can use these guidelines to say, “Okay, for this part, I can do step one, two and three.”
Kim
And the great thing is, what ENGAGe is doing is also educating our patient experts to be part of this guideline. Because we think it's very, very important to have patients participate in guidelines in clinical trials, to have the perspective of the patients. Because, you know, we know what it's like to be a patient and what's important.
Kim
We have so many great projects. And of course there’s World Gynecologic Oncology Day! It involves so many of our member patient advocacy groups and, you know, other members, doctors, etc.
It's fun doing things together. It's about, you know, the connection. It's also, of course, about awareness.
Anne
In Belgium, we do a short walk, because we also want to involve the patients who are still actively getting their treatment. So we do a short walk with a pause in the middle, where we share balloons with everybody around and share some flyers. Every year, we do it in another place in Belgium. We have Ghent, Antwerp…now it will be in Leuven. So we ask everybody to please join us. You can come with your partner, with your kids, with your friend. Just have a really good time and create awareness around! You're very welcome to join!
Icò
In Hungary we play sports all together. People from the country, patients, healthcare professionals, media, politicians. We always say that we “sport together, not against each other.”
So in Hungary, we have 21 “Mallow Stations” all over the country, and every year the task of organizing World Gynecologic Oncology Day is for one Mallow station. Each year they are changing it.
Also we will have a round table discussion on stigma. And also we have music and we have to dance!
Coming back to stigma, so it happens to be that all three of us are cervical cancer survivors. Of course, we deal with all the kind of cancers, also endometrial cancer, ovarian cancer, vulva cancer, vaginal cancer, but cervical cancer definitely has its own stigmas. Could you share something?
Kim
Up until now, cervical cancer has more or less been treated like a sexually transmitted disease.
But actually, the most important thing that we need to remember is this is a virus that really causes cancer. People die from it.
Eighty percent of people, also women and men, get HPV infected at one point of their life. So it's something that is more among us that we really know.
So, yeah, it's very important that everybody knows that it exists, and it's not just a girl that is going completely loose on a sexual basis, or it's not the case that the wife has cheated on her husband because she has it.
So we really need to open [the topic] and just say, like, “Okay, this is a virus. And okay, it's sexually transmitted. But it is not like we are sleeping around.”
That is just one example, and we have more. We have, like women with endometrial cancer, they say, “Oh, but that's because she's obese.” And ovarian cancer patients, “Oh, she didn't have enough children.” So yeah, there is still a lot of, actually, more or less victim blaming also going on. So that is really something we need to work on to get out of the way.
Icò
I remember when I had the cervical cancer it was in 2011 right after my second child was born. And at that time, there was no patient group or patient association focusing on especially cervical cancer or even other gynecological cancers. And I remember the first time when I met the first fellow cervical cancer patient, it was unbelievable. Because of the stigma everybody did not talk about that.
Of course, we have changed it since then. We changed it on a national level and on European level too, but still, there are a lot of stigmas. So I think it's very nice that we can talk about that, no matter if it's in the workplace or among friends, right?
Yeah, and one side is this sexual thing, but cancer itself is a stigma too. So even today it is a very, very difficult topic.
Kim
Yes, absolutely. And you know, because it's gynecological cancer, after a lot of treatments, you won't be able to have children anymore—sometimes it is possible, which is, of course, great, but a lot of times it's not.
And it's already horrible if you have this dream of becoming a mother, and then you can't anymore because of you had cancer. But it can be even worse if you're living somewhere or in an environment where you're not being seen any more as a “whole” woman, because you can't be a mother, or even because you don't have your womb anymore, for example.
So there are so many stigmas. You just mentioned the workplace. Can you imagine if you have, for example, vulva cancer and you have a male boss, what would you tell your boss? Or would you just say, “I have cancer?” Or maybe not mention it at all?
I was diagnosed in 2013, I had my treatments, and I got back to work, and I remember my boss was saying, “Oh, she's not as strong as anymore as she was before.” And they were really talking about me when I was there. And people really make up things about you, and that is that is really, really tough. For example, I have lymphedema. It’s difficult for me to stand. We have problems with the bladder, with the bowels, and we have to talk about that at work.
I can still do a lot of things. That's what I keep on saying. I have a lot of problems. I really have a lot of problems from my treatment, but I'm still really good at my job. Maybe I have to start an hour later, and maybe I continue at night, or I do something on a weekend. But it doesn't mean I'm less good at my job. So that's really a big stigma as well.