Beyond the Cancer Diagnosis: Dialogue with Foluke Sarimiye, Hosted by Adrian Pogacian

In the recent episode of ‘Beyond the Cancer Diagnosis’, Adrian Pogacian talks about the challenges of Pediatric Oncology in LMIC with focus on Nigeria: Psycho-oncological perspective, with Foluke Sarimiye, Clinical Oncologist/Psycho-Oncologist/Community Oncologist Co-founder and Executive Director Patela Care Foundation.

Dr. Foluke Sarimiye is a Clinical Lecturer in Radiation and Clinical Oncology at the University of Ibadan and University College Hospital, Ibadan, Nigeria. She specializes in cancer prevention, control, health disparities, and psychosocial care for patients, caregivers, and oncology teams.

Dr. Sarimiye coordinates undergraduate medical training and postgraduate programs in psycho-oncology and radiation oncology. She is the Executive Director and Co-founder of Patela Care Foundation (PCF) and serves on editorial boards and professional organizations, including ARCON, POSON, and IPOS ECPP.

Adrian Pogacian, MS Psychology, clinical psychologist with executive education in Psycho-oncology, holding a degree in Global Health Diplomacy from Geneva Graduate Institute. Currently, researcher and associate lecturer with focus on Impact of Cancer Diagnosis on Couples and Families, Communication in Cancer Care and Posttraumatic Growth. His expertise is on Coping with Cancer and managing Fear of Recurrence.

Additionally, Founder of INCKA Psycho-oncology Center, Host of Beyond the Cancer Diagnosis Interview Series as well as Writer and Host Content in Psycho-oncology at OncoDaily.com, co-author of the first Romanian Multimodal Care Guideline in Pediatric Onco-hematology, active contributor to the International Psycho-oncology Society, presently IPOS Fear of Cancer Recurrence SIG member and IPOS Early Career Professionals in Psycho-Oncology Committee founder member.

Adrian Pogacian: Welcome everyone to a new edition of the Beyond the Cancer Diagnosis interview series. Today I have the pleasure to present you Foluke Saramie. She’s a radiation and clinical oncologist in Nigeria.
Hello Foluke, thank you for joining us.

Foluke Sarimiye: Hello Andre and thank you for inviting me. It’s a pleasure to be here. I’m delighted.
Thank you so much.

Adrian Pogacian: Thank you. The topic of today’s discussions would be with focus to paediatric oncology but more precise with the challenges and psychosocial dimensions of what paediatric oncology looks like today in low middle income countries with focus on Nigeria. Dear Foluke, to begin our interview, I would like to explain or to develop for our audience how we see the concept of paediatric oncology in Nigeria.

And here I’m interested in, let’s say, the age of the patients, the average age of cancer diagnosis, access to healthcare, so how it looks this topic in Nigeria nowadays.

Foluke Sarimiye: Okay, paediatric oncology services and practice in Nigeria is still being developed. You know, studies have shown that there’s an estimated 200,000 diagnosis of childhood cancer in low middle income countries with just 20% survival rates as compared to 80% in other plans. And the prevalence of this will keep rising.
Particularly, I do not limit it to maybe the associated rural urban drift. In Nigeria, our practice is still being developed and there’s so much that needs to be done. The population-based cancer rate is in Nigeria, which is good, but not at its best.

It’s where we see the statistics from for incidence and prevalence. So, some studies, some pockets of studies have been done, and it shows that the statistics varies depending on the type of cancer. What I mean by that is that leukemia, Parkinson’s lymphoma, bone and soft tissue sarcomas, but basically an average of 4.7 years. Patients and children present with cancer in Nigeria, and then we have them for six years for hematological cancers like leukemia, Parkinson’s lymphoma, soft tissue diseases, cancers over like 11 years or 12 years. And another important thing to note is also the association between childhood cancers in Nigeria and the infectious diseases. I’m particularly talking about the malaria cancer control.

You know, preliminary studies have shown that there’s an association of childhood cancers with Epstein-Bell viral diseases and also Plasmodium Placiferum, which is the conservative agents for malaria. So, that could also be a reason why we have the incidence of the Parkinson’s lymphoma much more in Nigeria. And concerning the male to female ratio, boys, the male child is more frequently diagnosed with a cancer diagnosis compared to the girl child.
So, basically that’s in terms of our statistics in the country.

Adrian Pogacian: You mentioned also the opportunities, let’s say, working with an association, but what are the biggest challenges you have to face as a specialist in providing care to a child or to his parents or her parents in this context, which is not easy?

Foluke Sarimiye: Pediatric oncology cancers, I mean, generally in terms of cancers in Nigeria, we face the challenges we have are multifactorial. And I want to talk about it, we are told to categorize it into two aspects in terms of institution, and then also a military presentations. Now, for the institution, we don’t have adequate trained specialists in the country.
We have about 200 million people and population in the country, and yet the numbers of pediatric oncologists are so few, I think just about 10 to 12, I’m not sure, pediatric oncologists in the country. So, that problem is then for our patients, it’s late presentations. And the reason why there’s late presentation is multifactorial.

One, the referral system is not adequate. There’s a low index of suspicion for cancer, for pediatric cancers. So, before the patients and their family caregivers presented to the hospital, they would have gone through all kinds of poor referral system before they present.
Another issue that we face that I see is also financial subsistence. Our health insurance scheme is not adequate, though the government has tried to put some platforms to make it easier. Like what we have, we have the Cancer Health Fund now, which has been introduced in Nigeria where patients are credited from the federal government to help them ease that, but it’s still not enough.

Most of the cancer platforms that people provide, what I say relief for is mostly for high-risk cancers. Pediatric cancers is just coming in, we have to fight for recognition, we have to fight for opportunities, we have to tell them the importance of pediatric cancer in the country. So, most attention goes to breast cancer, cervical cancer, unicolorectal cancers.
So, pediatric cancer now is just coming to the forefront. Even this Cancer Health Fund that has been provided by the government was initially provided for high-risk cancers. It’s just in the last few years that opportunities have been given to pediatric cancer to be part of that health fund.

So, we have that issue. Then we also have the cultural and the religious beliefs in our country, where people prefer to go to traditional medicine or Chinese medicine to deal with things like that, because that’s when they see each other or when they see a child with a swollen tummy, they feel like maybe there’s something going on, black magic and all that. So, our religion and our culture, I believe, is also a big hindrance while we see late presentations in our country.

So, these are big issues, financial toxicity, late presentations, poor referral system, and inadequate training of pediatric oncologists. I really believe that pediatric oncologists in the country is a huge issue that we’re seeing.

Adrian Pogacian: You mentioned this, let’s say, inequalities in cancer care access, which is a nowadays topic within oncology, it is an important subject nowadays for everyone to have the equal access to cancer care. But as you mentioned, you have to face the system. Then you mentioned also about spirituality.

And here I want to ask you, from your experience as working with patients, what is the level, let’s say, of stigma in cancer care, especially of self-stigma? They are thinking like, it’s my fault that I have cancer or it’s somebody else’s fault that I have cancer. So, what are the barriers, psychological blocking, in trying to help them, starting from this self-stigma, which is nowadays a frequent problem to oncological patients.
This is the first thought, it is my fault. Maybe if I did this, I wish I couldn’t do this. So, what are the barriers that you have to face?

Foluke Sarimiye: So, sincerely, it’s a huge barrier in our setting, where our culture and religious belief plays a vital role in terms of our well-being. And unfortunately, the cancer diagnosis really comes with a huge amount of psychosocial issues. And stigmatization is definitely one of it.
And stigmatization even in terms of self-guilt, that what did I do? How did I cause this? Or somebody else is the one attacking me.

So, it’s a huge barrier and it affects our clinical practice because what that results to is that health-seeking behavior is core. People wouldn’t come to receive the fundamental orthodox medicine, wouldn’t come to that pathway, they would tend to go to traditional medicine or alternate medicine. So, it’s worrisome and eventually, if the care is not taken, it’s emotionally exhausting as an oncologist when most of the patients we see are presenting late, just because of this cultural and religious view that has to do with stigmatization.

So, what we need to do going forward in terms of how can we do this is being done, but we need to do it much more, particularly for pediatric cancers now. We need to increase awareness and advocacy. We need to amplify this, and not just in urban settings, but also in rural settings, where people are not enlightened and they can easily believe in the superstitions and all that type.

So, as clinicians, while we are in the hospital setting, we also need to be involved in community outreach and advocacy, particularly in rural areas. And one of the things that I’ve seen in my practice that people respond to is also survivors. If we have a child with survivors who have gone through things and they are now fine, we need to bring them on board too, because when they speak, the populace will listen better than if just an healthcare professional is the one giving the advocacy to tell them about a child with cancer.

If you come on time, the survival rate is good and all those things. So, we need to amplify our community outreach, our community advocacy, not just in urban settings, but also in rural settings where we have majority of people who actually believe this culture and their religious beliefs.

Adrian Pogacian: You mentioned the advocacy and all the issues, including financial issues, because as we know, oncology is not a cheap disease. And here comes the question about parents. How do they deal with the stress of having a child with cancer?
Or does your hospital or other association provide psychological or physical care regarding sleep problems or stress?

Foluke Sarimiye: So, psycho-oncology is a subspecialty that is so important. In fact, I call it the heart and soul of oncology care. And I totally believe that if you are taking care of a physical ailment and you don’t deal with the mental issues concerning that patient or the family caregivers, we actually won’t get the best optimal care or the clinical outcome we so desire.
Family caregivers are so important, particularly for parents of children or pediatric cancer patients. They go through a lot of stress.

They go through a lot of anxiety.
They go through a lot of pain. Will this child leave? You know, particularly when the child is preparing to write exams to go to college and all of a sudden the child is diagnosed with cancer and all those things stop.
Sometimes it has to do with some financial constraints. So, the parents go through a lot. Sometimes one of the parents may have to leave work, take excuses for work, just to be there to support the child while going through the treatment.

So, psycho-oncology, it’s not really where it should be. It’s much better, thanks to our president-elect she really amplifies psycho-oncology in Nigeria, but we still do not have psycho-oncology units in most institutes. So, we just have pockets of clinical psychologists who are just interested kind of giving services pro bono.
But what we need in our country is to have institutionalized psycho-oncology units in each institute or hospitals to provide this care for the patient. So, majority of the patients, of the parents and the family caregivers of these children, I’m sorry, they don’t get the adequate support that they need, psychological support they need. They don’t.

If they’re lucky to be in an institute, in an institution where I work, where psycho-oncology is well-established, they get it. But if they’re in other institutions, they would not get that. So, majority of family caregivers and parents of pediatric cancer patients, they don’t get psycho-oncology social support that they need yet.
There’s still needs more to be done in that area.

Adrian Pogacian: You mentioned psycho-oncology support in every, let’s say, hospital or healthcare institution. This is one of the core issues of psycho-oncology and all the international societies that are dealing with psycho-oncology. Also in Romania, we have this on our to-do list, at least one psycho-oncologist on each oncological hospital.

But as you mentioned, it is very, very difficult nowadays. The number of cancer patients are increasing, the number of specialists are decreasing. So, we will arrive at the point that we have to deal with so many patients that will not face, like physically, to succeed dealing with so many patients.
And here comes the issue of education. How is in Nigeria nowadays, this prevention and education from psycho-oncological point of view with regard to oncology issues?

Foluke Sarimiye: Okay. For Nigeria, psycho-oncology is still developing. But in the area, in terms of education, we have a master’s program, master’s in psycho-oncology at my department, Department of Psycho-Oncology, where we started the master’s program.
And we’ve had some people pass through this and they’re doing well. But most people would vocantrily sacrifice that one and a half months and one year, six months time. So, what we are looking at is that maybe to find a way to make certification, like a six-month diploma or a three-month diploma, so that these people can actually still go to various hospitals and then practice.

We have so many nurses who are interested, but I can’t come all the way to the West. Maybe some of them are in the northern part of the country and they’re interested and they feel that they can’t come all the way to the Southwest to get this education. So, the advocacy and the workshops for psycho-oncology, it’s growing, but it’s not as strong and as established as we really want it to.

So, we’re looking for different ways to maybe create diplomas or certification to reduce the master’s program so that more people can come and quickly go back. And then also, we can’t really do much also if you don’t have what I call high-profile engagements. We can have all the ideas, but if you don’t have strong stakeholders, political will from institutions who agree and see the importance and the benefits of psycho-oncology, we won’t go far.

So, we need to have high-profile stakeholders engaging with the state government, with the federal government to let them see the importance of psycho-oncology and creating those units in different institutions, teaching institutions in the country. That is the way forward. Even though we’re just doing pockets of advocacy, it wouldn’t go around.
It’s going to become a national thing. So, we also need high-profile engagements to make it work.

Adrian Pogacian: So, regarding psycho-oncology courses or specializations, this is also another important issue that, for example, International Psycho-Oncology Society is trying to manage it some way, but it’s also very difficult because you can’t do a curriculum that it goes all over the world. So, it is also, again, the thing of the national authorities to understand, to develop, to implement what we, as specialists, we recommend because we just can recommend something from our expertise, but more we can do because we give them the feedback from the ground, working with patients, but we can’t create programs and diplomas and so on. I would like now to return a little bit to your specialties as radiation oncology.

Did you meet cases of scan society, what it’s called, working with children, making a lot of CTs, magnetic, let’s say, issues and analysis. Did you meet this concept and, if yes, how you try to manage for children, not to understand, but to keep going, doing, which is very important for their health. It’s a crucial issue.

Foluke Sarimiye: Yes. So, scan society, really, it’s peculiar, more in children, but we also see it in adults, too, with people with claustrophobia, that you can’t really stay in the closed place, particularly where radiation therapy doesn’t go in. So, we have to deal with that.
But for children who are anxious and then up and about, they’re not calm. So, we try to, we see it all the time. So, what we do is that, before the treatment, we have what we call pre-visitors, where we take the children to see the area of treatment, to show them pictures about what it is about, we inform them, we indicate them.

And we also use distracting techniques that make, in a playful manner, try to explain in a childlike way, we are going to go into this place, and then this is what it’s going to be. Nothing’s going to touch you, but we’ll be here looking at you. If you need anything, you can just, you know, do this or do that, and we can hear you all the time, just speak.

So, the pre-visitors of information and guidance helps the children a lot. You explain to them, you make it playful, very playful, so that they feel okay. But in cases where, for radiotherapy, we still use sedation, pharmacological interventions, because it’s very important that they’re still doing radiation therapy, so that we’re going exactly to where the tumour is, and we’re not dealing with, you know, organ surgery.

So, we use ketamine in my centre, which is a mild sedation, pharmacological agent, just to keep them calm, because the children will just take about five to 10 minutes, and they’re done. So, we do that, and do the actual treatment. But before then, we educate them, make them feel comfortable.
So, yes, we see that a lot all the time.

Adrian Pogacian: And seeing this, and talk with the children before the intervention, how do you feel them? They trust you, not you personally, but trust the doctors. They trust the, let’s say, the process, but it creates an empathy.
Do you feel there is an empathy between you and the patients?

Foluke Sarimiye: I, well, I’m a radiation oncologist. I’m also a psych oncologist. So, I really understand the importance of clinical empathy.
I am an advocate for clinical empathic skills, that anybody working in the oncologist space must have a level of clinical empathic skills. You cannot, you can’t, you can’t work effectively in an oncologist space without empathy and compassion for your patients, because that is what they really need, besides the physical, no treatment, chemotherapy, radiotherapy, and all those we give them. Their mental well-being, and psychological well-being, emotional state is so important.

So, I practice it. And some of my colleagues do, some are still, you know, work in progress, but it’s a very important skill that you can’t be an effective oncologist if you don’t have clinical empathic skills. It’s a must.
It’s a must.

Adrian Pogacian: You mentioned also that you are an advocate. I know that also advocacy in cancer care, it is a relative new field, new domain, and not always the advocates have the results that they want to have. And what are the challenges for you as an advocate in oncology, except the bureaucratic things?
The patients understand, or the caregivers, because here in oncology, we are talking more about also about caregivers, and sometimes they are, let’s say, more problematic than the patients. So, as an advocate, how difficult is it to deal with caregivers?

Foluke Sarimiye: One needs a lot of patience in terms of having to repeat information over and over again. You know, when people already have a mind state sometimes about what cancer diagnosis is, and there are a lot of myths and misconceptions about cancer. I had a patient, a pediatric cancer patient, and I was, while the child was undergoing treatment, I was speaking with the mom.
And during the discussion, before the treatment started, I had a proper discussion with her about what it is and all that. And yes, she was there telling me that, oh, she’s isolated the child from the siblings. She doesn’t allow the child to play with the other siblings.

They don’t share, sleeps on a different bed. And I’m like, no, that’s so wrong. That cancer is not contagious.
That was the first thing I explained to you. But, you know, so having patience to, you know, re-educate over and over again and deal with the fixed mindset, it’s one of the barriers, because you could repeat information like 10 or 20 times, and they might still not get it. So, one needs to keep on educating them about this is what cancer is.
It’s not contagious. It’s not fatal. You know, so many misconceptions that one needs to keep educating them over and over again.

So, as an advocate, I think we need patience. It’s one of the issues to keep re-educating people. And then, of course, the other issues about advocacy, and we mentioned that apart from the family caregivers, it’s just education.
Having to tell them over and over again until they get it to a level that will not cause harm to your children or themselves either.

Adrian Pogacian: And we don’t have much time to finish in a positive way. As specialists, we have to provide hope. How is hope seen in Nigeria?
There is hope. You provide hope, but the hope that you provide is received by the patients. They have hope that it will be at the end.
Okay.

Foluke Sarimiye: If truth be told, it’s far. It’s not, I mean, if the truth be told, it’s hard to communicate hope. And I think one of the reasons is because of the misconception about the futilism of cancer, that once you’re diagnosed with cancer, there’s no way out.
And then also, unfortunately, because we have less presentations, so they hear of so many people who have died from cancer. So, telling people, providing hope that there’ll be a good clinical outcome is a challenge. You have caregivers say that, what’s happening?

Tell me, what was going to happen? And then you’re going to have somebody in denial. They don’t want to know.
And they’ll just keep hoping. So, it’s both ways. We have some hope, but most times it’s difficult giving hope in our setting, but we just have to.

We just have to.

Adrian Pogacian: We just have to go further, providing hope, and especially provide time, because the oncological patients feel that there is not much time left. And he tries to do everything all at once, which is also not good. There is time.

There is hope. And this is our interview conclusion for today, to provide hope, to provide time, to provide trust. So, Holuket, thank you very much for joining me today for these interesting discussions from from the ground, as I can say, to see the reality and which is most important.

And from reality to make it happen, it is a long way. But as specialists, we have to do our job for the benefit of the patients. Thank you very much.
And good luck in your activities further.

Adrian Pogacian: Thank you so much, Henry, for having me. It’s a pleasure to be here. And great work you’re doing.
Great work.