It was our pleasure to interview Sara Martinez Rios, an ovarian cancer survivor from Spain! Sara’s patient advocacy organization, ASACO, offers a wealth of programs and support for gynecological cancer patients while also working to improve policies and care. Every year, ASACO has exciting awareness events for World Gynecologic Oncology Day and World Ovarian Cancer Day (May 8). Read below for a transcript of our conversation (edited for length and clarity) or watch the full interview in our Reels on Instagram!

World Gynecologic Oncology Day

Thank you for joining us today for a beautiful afternoon! Can you tell us a little bit about yourself and about the organization (ASACO)?

Sara Martinez Rios 

Professionally, I'm an engineer. I'm the mother of two teenagers, and I'm an ovarian cancer survivor diagnosed seven years ago. I am from ASACO, as you mentioned, and I joined ASACO, I think just after the diagnosis seven years ago.

We have, several support groups all around Spain, in the most important cities, and then we have some in-person events twice a year. One of them is World GO Day, and the other is the eighth of May, Ovarian Cancer Day . And then we have lots of seminars, webinars, online events, clubs, a reading club and writing club or mindfulness classes.

World Gynecologic Oncology Day 

You’re doing quite a lot. You mentioned mindfulness classes. One of the things that we see a lot on your social media, which is great, by the way, is the Projecto Bienestar, which is one of your star projects, right?

Sara Martinez Rios 

Yeah, we are very proud of that project. We started ten years ago, and we've been providing it all those years in a row, and we hope to keep providing it for many more years. We provide psychological health sessions to cancer patients and relatives. Not just the patient, but also the husband, the mother, the daughter, whatever, and also pelvic physiotherapy.

World Gynecologic Oncology Day 

What are some of the pressing problems for gynecological cancer patients in Spain right now?

Sara Martinez Rios 

I think the main one is we need centers that take specialized care of our patients. And we have some ESGO accreditations (in Spain), of course, but—would you go to the hospital you have closer to your home, or your usual gynecologist? And no one tells you go to this reference center. It has to be well informed—if not, you just go to the nearest center. We need to work on that.

[Note: ESGO is the European Society of Gynaecological Oncology and the parent organization of World Gynecologic Oncology Day. Learn more about their accredited centers for gynecological cancer treatment at https://www.esgo.org/accredited-centres/]

World Gynecologic Oncology Day 

You mean, when a patient receives a diagnosis and then they need to go from their diagnosing doctor to somewhere else to receive the therapy, they're not quite sure where to go, and maybe they don't know the quality of the center, or whether the center sees enough patients to have experience?

Sara Martinez Rios 

Yeah. It's also a problem of (general) awareness. If you are diagnosed with this disease, or some of your relatives or whatever, you will say, ‘okay, I need to look for the right place to go first.’

But if we don't even know this kind of cancer exists, then you're kind of lost, and you go to the first place, and you get operated on by the first doctor. You use a gynecologist that is a good gynecologist to deliver babies, not to do an ovarian cancer surgery. Like heart surgery—would you go to whatever place to have your heart operated on? So that's part of our work.

World Gynecologic Oncology Day 

Our campaign is about stigma. What are some of the stigma you think that gynecological cancer patients face in Spain?

Sara Martinez Rios 

One stigma is just cancer. Cancer by itself; it's the first part. Then if you go to gynecological cancer, it's kind of even worse, because it's taboo talking about sexual issues, sexual things. We know some of the side effects in any gynecological cancer have to do with sex, and that's taboo by itself. So it's kind of taboo over taboo, like double taboo, and that's a huge stigma to overcome.

World Gynecologic Oncology Day 

How can we lift the stigma so that people aren't afraid?

Sara Martinez Rios 

Information. If we know something, we can talk about it more freely. Information awareness—that's vital. That's one of our main goals in ASACO. And being part of an association makes you feel stronger, makes you feel more informed, and you know that someone is kind of taking care of you, you feel stronger to talk and to express yourself and to fight against stigma together.

 

World Gynecologic Oncology Day 

Do you have any advice for someone who wants to start their own activity for World GO Day?

Sara Martinez Rios 

You need to have support. I think it's kind of a heavy load for just one so if you have your support net—together, we can do lots of things.

World Gynecologic Oncology Day 

Thank you. What advice would you give to gynecological cancer patients who are experiencing stigma or are feeling burdened by negative opinions from people around them?

Sara Martinez Rios 

We all, as patients, have our own path, our own speed. There are lots of phases in this disease. It's a long-distance race, so maybe at first you don't feel like talking about it, and you are feeling kind of shy, and maybe with time, you feel more confident, you feel you want to share, maybe you join an association.

I would say, if you don't feel like talking about it, you don't have to. But don't keep it to yourself. If you feel you need help or you need to talk about it, you have psycho oncologists that can help us a lot.

You have women that have been through what you are being through right now. I talk to many women, and since I lead the super group in Valencia, and lots of them tell me, ‘I feel much better now after talking to you,’ and that's my best reward, because I've been there, I know how it feels to be there, and now I feel better, I feel stronger, and I can provide help to others.

So if you need help, ask for help.

World Gynecologic Oncology Day 

Do you have anything else that you'd like to say to our audience before we wrap?

Sara Martinez Rios 

I encourage them to raise awareness as much as we can and not stop fighting for our goal: raising awareness, getting reference centers and helping neglected cancer patients all over Europe.