We were delighted to catch up with Eirini Lionaki, an endometrial cancer survivor who is active with the patient advocacy group K.E.F.I. in Athens, Greece. She talked to us about the importance of joining a patient advocacy group. Read below for an excerpt of the conversation (edited for clarity and length) or swing over to our Instagram to watch the full interview.

World Gynecologic Oncology Day

Eirini, could you tell us something about yourself?

Eirini Lionaki 

I'm 46 years old, mother of two girls, and have a wonderful husband named Christos, and I work for the public sector as an economist here in Greece. I am from Crete.

World Gynecologic Oncology Day

I love Crete! You are with the group, KEFI, and you told me when we spoke before the call, that “KEFI” means something nice in Greek. The organization is k, e, f, i, it's an acronym, but what does the abbreviation mean?

Eirini Lionaki 

“Kefi” in Greek means ‘let's have fun while listening to music or going out with friends.’ But it’s the patient-doctor friendship organization.

World Gynecologic Oncology Day 

And what does KEFI do?

Eirini Lionaki 

It’s an association founded in the spring of 2004 in Athens with the aim of offering emotional, psychological and social support to oncology patients and their family members, as well as informing and raising awareness of society about cancer. But nowadays, KEFI is something more than that. KEFI is our second home for us, the patients.

World Gynecologic Oncology Day 

Why did you join? What brought you to it?

Eirini Lionaki 

Well, I was looking for something that was going to help me emotionally, because in my family, in my friend circle, we didn't have any other cancer patients. So I needed to speak with people who had the same experience with me, and especially with women who faced gynecological cancer.

Community. For four years I didn't have any help, I needed three years to find out that there is an association like KEFI which can help me and offer me all the things that I was looking for.

KEFI has groups with patients, with specialists, psychologists, also they have dietitians for giving proper nutrition when you are under therapy, chemotherapy or other treatments. It also has cosmetics so if you have a problem with your hair, with your eyebrows and you need to make up and feel better, we have a makeup artist which teaches you how to do it and feel better every morning.

Also KEFI has artistic lessons with painting and things that makes you feel relaxed, and you can express your feelings through art therapy.

World Gynecologic Oncology Day 

This year's World Gynecologic Oncology Day theme is about stigma. Could you tell us something about what kind of stigma gynecological cancer patients face in Greece, in your opinion?

Eirini Lionaki 

All cancer patients have obstacles, but living in a country like Greece, which is very conservative, talking about our organs (is a taboo). Imagine that parents, they don't discuss with their kids about the first period or the sexual life of the child. When you don't have the power to talk to your children about the organs, how are you going to talk about gynecological cancer?

World Gynecologic Oncology Day 

It’s so difficult, because every woman has a different experience with her period and the way her body feels. But without talking to your friends or your mother or someone in your family, it must be hard to decide if something is normal or abnormal, and most gynecological cancers have vague symptoms.

Eirini Lionaki 

Yes, I remember when I felt the first symptoms of the disease. It was in 2020. I was talking with my mother and my best friend that I'm feeling that I'm going through menopause at the age of 42. They preferred to make me feel better. ‘No, no, that's not. There's nothing going wrong. Don't be worried.’ And the conversation stopped there.

And not even me or the people around me wanted to say, ‘go and see your doctor and find out.’ They just told me, ‘There’s nothing going wrong. It is something that will pass in a few weeks, days.’

It took me months to find out that I had endometrial cancer, because I was thinking that there's nothing going wrong. Everything is natural.

World Gynecologic Oncology Day 

Because nobody's talking about it, so you think—it must just be part of my life.

Eirini Lionaki 

Sure.

World Gynecologic Oncology Day 

Well, thank you so much for being willing to talk about it in public. If people are afraid to talk about it with their family, it's also difficult, then to go to a doctor with it, right?

Eirini Lionaki 

It is getting more difficult, especially when you go and visit the Greek public health system, which is very tired and doctors there, they don't have time to discuss with you. They only see the finger, and they think that they have to cure the finger, and they don't see the patterns as a whole person.

World Gynecologic Oncology Day 

In your view, as a patient, as a patient advocate, how can we erase the stigma or lessen the burden of the stigma for patients in Greece?

Eirini Lionaki 

If we spread the awareness of these gynecological cancers, that's the only way that stigma will disappear. And if the community stops thinking that when you have a cancer, you have finished, you're not able to get the job, you can’t get a loan from the bank, that you go to the corner and you don't exist because you're going to die. No, if you have cancer, it doesn't mean that you're going to die. Cancer is a disease, it can be cured, or it can be at a very good level with the proper treatment.

And we are human beings who want to live like all the others, normal, without other people facing cancer patients like we are something different. We are not different. No one's different.

World Gynecologic Oncology Day 

We're all just human. Before we came on the call, you were telling me about some good news that has happened in Greece due to increased awareness about cancer patients’ rights and gynecological cancer. Do you want to tell us a little bit about that?

Eirini Lionaki 

Yes, that has to do with the power of the associations, because if you are alone, you can't do many things. When you are a team, you can manage things better. So in our country, we have changed the law, and from now on, cancer patients can work at home two days a week.

World Gynecologic Oncology Day 

So because patient voices came together, they were finally heard.

Eirini Lionaki 

Alone, no one's going to hear you.

I promised myself that I'll fight for the women, because my two girls are going to face the same problems in this country. And I think we deserve the best. Everyone deserves the best, absolutely, and no one should be afraid to ask for the best.

World Gynecologic Oncology Day 

Eirini, it has been a real pleasure talking with you. Is there anything else that you'd like to say to our audience?

Eirini Lionaki 

Well, we're very lucky to have KEFI here in in Athens. Greece has the difficulty of the islands. They don't have hospitals on the islands, so women there have delayed diagnosis. So we need some way to solve that problem.

I wanted to say also something to all the cancer patients: that they must never stop believing in themselves and that everything is going to be okay, everything is going to be fine.

World Gynecologic Oncology Day 

And you are proof! Thank you again.