Prof. Dilyara Kaidarova, a gyn oncologist and president of the Kazakhstan Cancer Society, and Dina, an ovarian cancer patient in Kazakhstan, joined us for a very interesting discussion about the situation for gyn cancer patients in their country. We were so pleased to have them join us! Read the excerpt below or watch the replay in our Reels on Instagram!
Prof Kaidarova
First, I want to thank the organizers of World Gynecologic Oncology Day that you invite me to participate
For more than 30 years I have dedicated my life to working in oncology, and all my activities are aimed of saving life and fighting cancer. And for over 20 years, I headed the oncology service of the city and of our country, and all my efforts aimed to realize our cancer control plan. We haveimplemented two cancer control plans in our country.
World Gynecologic Oncology Day
I should also mention that Professor Kaidarova is an active member of the ESGO Prevention Committee. ESGO is the European Society of Gynaecological Oncology and World Gynecologic Oncology Day is an ESGO and ENGAGe patient network project!
We also have an ovarian cancer patient with us today, Dina.
Dina
My name is Dina. I am from Almaty, and I am ovarian cancer patient, first stage ovarian cancer. I have completed my chemotherapy, which is based on the platinum, in the end of the November. I had my surgery in August 2024 in Almaty. I don't have a certain doctor in my center because they are every time changing, so I just connected to one, let's say office or doctor cabinet, where I am checking every three months. So I'm not working. Unfortunately, due to my diagnosis, I lost my job, and I'm now trying to get some governmental pension as a patient. Hopefully it will be approved, but I'm not sure.
World Gynecologic Oncology Day
Thank you so much for talking to us today. What are the main challenges that gynecological cancer patients face in Kazakhstan?
Prof Kaidarova
In our country we can see many challenges. I think this is the first; it is our cultural stigma.
And, limited access in rural areas, and fear of shame associated with gynecological exams.
Also, younger women often do not consider themselves at risk and also lack information about symptoms and the importance of regular screening.
In our country, one of the main problems for patients is they are afraid to go to the polyclinic to get checked, because they are afraid to hear this diagnosis. That is a huge stigma. I think many countries have this same stigma.
World Gynecologic Oncology Day
Our campaign this year and last year has been focused on highlighting the stigma so that we can erase it. So if we acknowledge it, we can get rid of it.
Prof Kaidarova
Yes, we need to increase the knowledge of our patients, of our citizens, about prevention programs which we have in our country. About of course, the possibilities: what's in their area, which equipment they have to go to, when they need to go. This is a big problem about knowledge and awareness.
World Gynecologic Oncology Day
And Kazakhstan is a very large country, right? So, these rural areas are quite large.
Prof Kaidarova
A huge country. Between one village to another, 300 kilometers, 500 kilometers. Of course, it is very difficult for citizens to go to the city to check up, because they all have their jobs and they didn't want to go.
We talked many times with our government and with our mayor of each area about this problem, and our decision was to buy mobile screening machines like mammographs, CT, ultrasound. They will come to the villages. They will check these citizens, and then after one year, they will come again. And now we have three in three areas of our country. A mobile machine with mammograph, one with ultrasound and one machine for CT.
World Gynecologic Oncology Day
Dina, from the patient's perspective, you're in Almaty, right? So I guess you don't face the same challenges that someone in a rural area might have?
Dina
Since I'm a citizen of the city, I don't face a lack of screening. I receive the calls from my clinic, from where I live, and they asked me to come to do the screening and ultrasound and everything. I did it on time. But unfortunately, what happened to me—I was self-diagnosed. I touched my body and my belly, and I found some issues. And then I went to my clinic to investigate what is happening.
World Gynecologic Oncology Day
It’s lucky that you thought to do that.
Dina
Yes, because I'm a health-conscious person, this helped me.
World Gynecologic Oncology Day
Among people who are not medical professionals in Kazakhstan, Dina, do you think that the symptoms of ovarian cancer are very well known?
Dina
I think people don't know symptoms. Many people, most of the women, they are very afraid of saying the word “cancer.” In Kazakh culture, it's called not ‘cancer.’ It just called like, ‘bad disease.’
So nobody wants to be this kind of patient. When people hear about cancer, they immediately hear that it's death.
Unfortunately, I heard many people start saying that “surgery is enough, I don't need further treatment,” and so on.
Most of women in villages, even in the city, they are afraid to go to the clinic, because the clinic, the medical people for us, are somebody we are afraid of. Because they are concerned about the bureaucracy, about the career, but not about the patient. This is a stereotype in our culture.
World Gynecologic Oncology Day
For patients, is it the fear of the name of the disease, or is it the fear of being labeled as a patient?
Dina
I think both sides. Many people, they are afraid to talk about their disease, because people start thinking that you are contagious. So it's kind of a stereotype like that.
So I understand absolutely the people who are living now with this cancer disease, that they are very hidden, and they have own circle, like family and friends, and they don't tell everyone about that.
But since the screening, these programs work very well. Many young people or brave women, let's say onco-patient bloggers, who started to broadcast their life, how they live, how is the treatment, what the surgery, etc., etc. So I think now it's became more open compared to the previous time.
World Gynecologic Oncology Day
Are you part of a patient organization or a patient group?
Dina
No, I don't see in Kazakhstan any patient group. I have Telegram groups from Russia, which are very educated. They are professional. Unfortunately, we don't have, like, a good connection with doctors as a patient.
World Gynecologic Oncology Day
But Professor Dilyara is working to change that.
Prof Kaidarova
Yes, we were talking with our patients, and they didn't know we have a psychologist department in each our oncology centers who need to talk with patients.
It is a problem with psychologists in our country, because they work one year when they come to oncology centers. And then they go to another center, not in oncology, because it is very difficult to work with this. They have some problems to work with patients, oncology patients.
We need to change the stigma in the minds of our patients that the cancer, it means death.
When patients know about this diagnosis, they close up. They don’t want to contact with friends. They don’t want to contact with societies. We always invite our patients who are treated, who are now free of cancer, but they don’t want to talk. Because patients need success stories.
World Gynecologic Oncology Day
Dina, you said that you weren't really aware about ovarian cancer before your diagnosis
Dina
Starting from my treatment, I started to follow different international bloggers who are ovarian cancer patients, and I know some people who are doing running or doing sport.
I am listening to many success stories, which is very positive, but unfortunately, I don't like to be in the patient's society. Because for example, I did my treatment and spoke to three women who are in the same situation, like ovarian cancer, but they died already.
So sometimes it's like, you know, you should keep the balance. Should you be in these societies or not? Or do you need to live a normal life?
For me, it was very hard to face this reality.
Unfortunately I had met the psychologist in my oncology center, and was absolutely unhappy, because the person just said, “Please face it, you have cancer, so you cannot avoid that.”
I think the psychologist should be specialized in the oncology patient, so the person should know how to work with the patient, and not just say “you should face it,” but probably be more specific.
I started to search for a psychologist for myself. And you cannot believe that I went through 20 psychologists—20!—and nobody could help me, really. So I ended up with a situation that it's impossible like to find, like a proper oncology psychologist, and unfortunately, I don't, I think we in Kazakhstan, we don't have such kind of a specialist.
For the oncology patients, it's very expensive to go to the psychologist. For example, myself, I had some savings from my job. I did everything in order to put myself into real life again, after treatment, but even now, I'm not in the normal situation till now physically, because I have side effects from the chemotherapy, very serious side effects, and my emotional situation is not stable.
So in this situation there should be a psychologist who should work while the patients are taking the treatment, when they hear diagnosis, when they are during the treatment, and more important is after treatment, because your patient's life, it's like divided before the diagnosis and after. You're changing.
I don't know what happens in the future, but I am trying to become a normal person, but it's very hard. I can imagine women in the village, in small cities, who cannot receive this kind of help.
World Gynecologic Oncology Day
Thank you for speaking so openly about this. I think this is something that a lot of people don't want to admit, because they feel like it's their fault. It's obviously not their fault.
Dina, do you have any last thoughts that you'd like to say, anything that you'd like to share with our audience?
Dina
Speaking from my soul to doctors: Please, please, if you don't have time to speak about what really happens, don't hide.
I mean, speak everything the patient should know. Because in my case, I didn't know all information about disease.
My family and myself faced it for the first time. So since I'm an educated person, I started to investigate and know and read and analyze what happened.
But doctors, they don't have time, or I don't know why they didn’t talk to me. They don't want to be attached to the patients? I don't know.
They don't speak fairly; don’t give all the information.
And doctors also should give patients all the resources. Because even now, I don't know if we in our country or in my cancer center, if they have a rehabilitation program. I heard about that, that other countries have one, but I don't know, even after the treatment. What patient if a patient lives alone? She's alone. She doesn't receive any help.
Patients need to know everything about their disease, and what resources they have.
If this disease is not treated well, please inform them about that. What kind of resources from medicine, like what kind of chemotherapy the patient will receive, and what kind of side effects?
If the patient comes saying, “I have this side effect?” Don't say, “It's impossible. There is no kind of side effects.” Because from my doctor, from my chemotherapy, I received this kind of comment. I was saying, “This is a side effect. Please look at me. I have this.” And the person said, “No, there is no kind of side effect.”
Doctors, please accept all this information. If you don't know, just say, “I am not familiar with that. Let's investigate that. Let's see.” I think when we are speaking about cancer, about the cancer patient, the patient should know everything.
And this is why when patients receive a diagnosis, they start to travel abroad and receive the medical help from like Turkey or from Korea. It's on the commercial, on the business side now in our country, unfortunately.
World Gynecologic Oncology Day
So if you have the advantage of being able to travel or being able to speak another language, then you might have more resources.
Dina
Yeah.
So I know that many people, they sell their real estate, their cars, and they receive a lot of debt just in order to travel somewhere not to be treated in Kazakhstan and receive all this medicine, like medical help abroad. Which is very, very sad.
I was very patriotic, and I saw that the medicine is very advanced in Kazakhstan.
And unfortunately, this is not what I experienced in my case.
I wish all the doctors could be more open and not just see, like, on the bureaucratic side, but see the person, see the patient.
I know there is no time, because doctors are only limited to 15-20 minutes and have a long line of patients, like, 200–100. I understand completely.
I went to the doctor, I said, “If I pay, for example, can I receive the information or receive the treatment?” I even asked it like that. And the doctor said, “No, we don't know. You should search yourself.”
But the patient should receive treatment, or they should receive information.
So this is from my heart, right? The doctors need to be very open. Even if they don't know, even they cannot help. Just say that. That it's impossible.
World Gynecologic Oncology Day
Thank you so much for being honest and so open. People everywhere in the world will listen to this and maybe take heart and think that they can speak up about the system.
But I want to be clear, Professor Dilyara, is not your doctor. We are on the same call, but you are not doctor and patient.
Professor Dilyara, do you have any advice for your colleagues? Who are dedicating their lives, they're doing everything they can, but still they have a situation where the system is making it difficult for patients to receive adequate care. How do you keep motivation?
Prof Kaidarova
Thank you. Dina, of course, sometimes doctors, they haven't time. They need to go to operations, they need to look at patients, and they haven't really time to talk with you.
It’s a problem, because patients are listening only to doctors and what doctors say you will believe.
I see that there is no connection between patients and doctors in in our country. Yes, it is a huge problem, and we need to change. Doctors, of course, need to change. They need to understand what problems patients have.
Because, yes, sometimes we didn't want to talk because every day there’s one patient then change another patient, and every day the same problems.
I know that patients have some disconnection with doctors in our country. And of course, we need to start to focus on awareness. Even small actions make a big difference.
Patients, they need to know that they are not alone.
All doctors are thinking about patients—they didn't talk with you, but—always, we're thinking about patients. We have our multi-group session every day. We're thinking, we're talking about which operations you need, what chemotherapy you need, which targeted therapy.
But of course, we have our protocols, and we need to help you, like doctors. But of course, there is another side. Now we hear about this problem, and I think we will be more open.
And of course we need to use our social media to amplify our voice.
Now maybe, Dina, you can see our media. They changed. Before they didn't want to do any program about cancer. And that is this very big problem. It is very difficult. And this is now all changed, and I know our president is thinking about our cancer control program. The government gave money for us to build new oncology centers, to change equipment. And now we change our protocols, and our protocols are the same as in Europe and in other countries.
Before there was a problem with BRCA testing, and now we started to do it free for patients. It is free for patients.
Yes, it is all huge work, what I need to do.
World Gynecologic Oncology Day
We hear this conversation in many different countries, where the resources are starting at the top, but how do they get down to the patients? There is a gap in the middle.
Dina
Unfortunately, my doctor hasn't informed about this kind of testing.
I found out from another patient with the same diagnosis that you need to do this. BRCA–I didn't know about that because I, as a patient, I didn't get informed about that, right? So I went to the one of the labs in our city, and I paid.
But it happened after the treatment.
I don't know what kind of analysis. I should know. I haven't heard that this kind of testing can be done free.
For example, after the treatment I knew that I was not treated well because I didn't receive the targeted medicine, targeted treatment. So in my case, in my disease, I should have this targeted treatment. But unfortunately, it's extremely expensive. I started to research what kind of price. Probably thought I could pay and do myself, but it's extremely expensive. It is like $4,000 per one treatment, right?
Unfortunately, I asked my doctor about that, and she said, ‘No, you don't need any other treatment.’
Prof Kaidarova
So because you have first stage (disease), that is why, maybe. We need to check your case, of course, with our doctors, and I will talk with the head of the gynecology department about your case, and I will check all that you received before.
World Gynecologic Oncology Day
This has been a very interesting conversation, and there's no good place to stop, because it's more and more interesting! Thank you both for your honesty, your openness and for your willingness to come and talk about these difficult topics.
It's not easy to talk about these things, and you're both doing just amazing work that I think is really going to be helpful for anyone who comes across this interview or who finds the transcript. Thank you.