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JCO's Cancer Stories: The Art of Oncology podcast series consists of author interviews and readings of the section’s content. This platform provides authors with the opportunity to comment on their work, offers better accessibility for readers, and stimulates more conversations. Art of Oncology publishes personal essays, reflections, and opinions in the Journal of Clinical Oncology, giving our readers a chance to reflect on important aspects of practice and help shape our professional discourse. We hope you enjoy listening to these thought-provoking stories.

 

Dr. Lidia Schapira

Cancer Stories is hosted by Dr. Lidia Schapira, MD, FASCO.

Dr. Schapira is the Associate editor for JCO’s Art of Oncology. She is a Professor of Medicine at Stanford University School of Medicine where she serves as the Director of the Cancer Survivorship Program. 

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Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests' statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Jun 14, 2022

"Cancer and Armed Conflict: Crossing Realities," by Tamamyan, et al: the story of a young patient with cancer from Nagorno-Karabakh Republic and his thoughts and sufferings during the war in 2020.

 

TRANSCRIPT

Narrator: Cancer and Armed Conflict: Crossing Realities, by Alisa Kamalyan, MSc, Yeva Margaryan, MD, MPH, Jemma Arakelyan, MD, Liana Safaryan, MD, Gevorg Tamamyan, MD, MSc, DSc, and Stella Arakelyan, MD, MPH, MscIH, PhD (10.1200/JCO.22.00663)

In 2007, Armen, a 6-year-old boy from a village in the mountainous Nagorno-Karabakh Republic (NKR), was diagnosed with Hodgkin lymphoma. NKR is a de facto independent state located in the South Caucasus which has historically been inhabited by Armenians and declared its independence after the collapse of Soviet Union in 1991. Armen’s hometown had a small clinic offering only routine health care services. To receive treatment for lymphoma, he and his family had to travel 350 kms to the Hematology Center in Yerevan, the capital of Armenia. The journey was long and exhausting, but every visit to the Hematology Center filled him with hope, and, ultimately, he achieved a complete remission.

Thirteen years later, Armen, now a young man, returned to the Hematology Center for evaluation of rapid weight loss, persistent pain, and chronic fatigue and was diagnosed with osteosarcoma. First-line chemotherapy and surgery were ineffective, as was second-line therapy with high-dose methotrexate, doxorubicin, and cisplatin. The tumor was growing and spreading rapidly, causing unbearable pain.

Throughout the course of his disease, Armen kept a diary. Recently, his family shared his journal with us, hoping to give a voice to Armen and other young patients with cancer struggling with physical and emotional distress along with overwhelming existential angst.

“In the hospital I had dreams which I could not understand. In one of the dreams, it was midnight, and I knew that I was going to die in 3 hours, but time was running backward, which meant that I was going to die at 8 pm … In another dream, I was undergoing a course of chemotherapy when my phone rang, the call was from Hell. I picked up the phone, and it was one of my relatives from Nagorno-Karabakh who is no longer alive.

But you are dead …, I said to her, surprised.

How are you, my dear? She replied.

Once I hung up the phone, a man dressed in black sat down next to me, made the sign of the cross, and then disappeared …”

At the time, there were no clinical trials available for patients with osteosarcoma in Armenia and his family could not afford to take Armen abroad to receive any experimental therapy, so, after exhausting all available treatment options, Armen returned home to live out his days in the village that helped raise him. We knew that his home environment would provide the support he needed as his cancer journey came to its tragic end. We hoped for his comfort, safety, and peace among those who loved him.

On the morning of September 27, 2020, Armen awoke in a panic, distressed by the loud explosions of bombs dropped on his village as the war between the NKR and Azerbaijan erupted. This conflict, coinciding with the rapid spread of COVID-19 in NKR and Armenia, interrupted access to cancer care and essential palliative medications. Armen was bedridden with intolerable pain and a dwindling supply of analgesics. The encroaching sounds of high-intensity blasts further amplified his anguish and suffering.

Armen’s psychological trauma resulted in nightmares and chronic anxiety as evidenced by his diary entries.

“My house keeps shaking with each explosion, resonating like a high-scale earthquake. Soon, the blasts will shatter all the windows in my house” (October 1, 2020). “Our electricity, heating, and water supplies are cut off. My supply of painkillers is running out” (October 9, 2020). “Don’t think about death– think about the future…”

Within weeks, the Nagorno-Karabakh conflict escalated, destroying homes, healthcare clinics, hospitals, and schools, resulting in massive population displacement and hundreds of civilians, including health care providers, being killed or wounded. Given these dire circumstances and Armen’s worsening pain and weakness, Armen’s family sought refuge in Armenia, where his battle with cancer ultimately ended.

After the war ended on November 9, 2020, Armen’s family took him back home to be laid to eternal rest. This had been his last wish. Armen was a fearless soul. He was a fighter who had already survived cancer once and continued his fight with a smile on his face, giving hope to many of our other patients and staff. But the day the Azeris attacked his home, the smile left his face forever.

For our health care team and other colleagues, the 44 days of the Nagorno-Karabakh war caused a psychosocial and emotional crisis. We could not concentrate on our work. Hundreds of soldiers were being killed daily, and many colleagues felt compelled to leave the cancer wards to join frontline military health care workers. With increasing numbers of surgeons, anesthesiologists, and nurses traveling to the NKR or bordering regions of Armenia, we experienced acute staff shortages, undermining the provision of quality care to our patients. COVID-19, the main health care concern for the rest of the world, was no longer our priority, even as the incidence increased 8-fold during the war.1 The vicious cycle of war and pandemic was tormented as we tried to balance our own emotions and fears while continuing to care for and support our patients with cancer.

Armen’s story provides only a glimpse of what people with terminal cancer and the health care workforce experience in resource-limited settings affected by war. Today, around half of the world’s population lives in countries affected by war, with predictions that cancer will disproportionately affect these regions in the coming decades. Because of multifactorial resource limitations, patients with cancer from these areas are usually diagnosed in advanced stages of the disease when palliation is the only viable option for care.

Worldwide, an estimated 78% of adults and 98% of children in need of palliative care reside in resource-limited regions. A third of adults needing palliative care services are patients with cancer and 80% of them live with moderate or severe chronic pain. Despite these data, only 10% of the world’s overall morphine consumption occurs in resource limited regions. The provision of palliative care services is

even more strained by armed conflict. Recently, the World Health Organization reported that palliative care was available in less than two thirds of Syrian health care facilities and that all cancer centers surveyed in Syria lacked immediate-release oral morphine and trained palliative cancer care staff.

Currently, we are witnessing an escalating war in Ukraine. The images from this and any new conflict around the world bring back our own wartime experiences with haunting clarity. The desperation we felt trying to care for the most vulnerable patients during lethal and chaotic times will never leave us. How many children are now writing tales of death in their journals? How many villages and families are being shattered, unable to provide last days of peace and comfort to their sick and dying loved ones?

Despite recent initiatives to include oncologic and palliative care contingencies in humanitarian responses to crisis, they continue to remain a relatively low priority and have been minimally integrated into emergency response plans during armed conflicts. Protocols detailing how to provide basic care to patients with cancer and maintain supplies of essential medications are yet to be fully developed. We urge the international community to take action to address the existing obstacles to cancer care delivery in conflict affected regions to mitigate the adverse impact of cancer and armed conflict on our most vulnerable patients.

 

Dr. Lidia Schapira: Welcome to JCO’s Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, which offers a range of educational and scientific content and enriching insights into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host, Lidia Schapira, associate editor for Art of Oncology and Professor of Medicine at Stanford. And with me today is Dr. Gevorg Tamamyan, Chairman and Professor of the Department of Pediatric Oncology and Hematology at Yerevan State Medical University, head of the Pediatric Cancer and Blood Disorders Centers of Armenia, and Chairman of the Board of the Institute of Cancer and Crisis. We will be discussing his Art of Oncology article, ‘Cancer and Armed Conflict Crossing Realities.’ Our guest has travel, accommodation, and expenses from Roche.

Gevorg, welcome to our podcast.

Dr. Gevorg Tamamyan: Thank you! Thank you very much, Dr. Schapira, for the invitation and for this opportunity to speak with you.

Dr. Lidia Schapira: It is our pleasure. Can you tell our listeners a little bit about the origin of this narrative? How your team come together to tell the story now?

Dr. Gevorg Tamamyan: So, living in a region where every day you face not only - and being an oncologist in the meantime - facing death not only from cancer but also from the war, it makes you think about cancer from a different perspective.

During my not-so-long life, I experienced three wars. The second one was a little bit shorter, but the first one was quite a long one. I was a young boy at the school age and the second one, the large one, was recently in 2020.

Later on, being already an oncologist, when every day you are walking in between life and death and your everyday work is dedicated to saving one more life, sometimes you realize that with one bomb people can kill hundreds and thousands.

So, having this on my mind, I started exploring the field a few years ago, even not knowing that a new war is going to begin in 2020. And we wrote an editorial in Nature Cancer Reviews, I think it was 2019, if I'm not mistaken, about how the war affects cancer patients and cancer care in general. And then in 2020, when we had this sad experience, then we thought that we must express our feelings and reveal what happened, what happens with cancer patients during the war situation. And just recently, of course, there is a new war in the world and we see all this struggling every day. So, unfortunately, this topic does not lose its actuality, I would say.

Dr. Lidia Schapira: You chose to tell the story of a young boy who first came to your major academic center in Armenia at age 6, and you treated and cured him of Hodgkin's lymphoma. And then he returns as a young adult, 19 years old, with an osteosarcoma that you treated. But unfortunately, treatment was not curative, and he goes back to his village and needs to receive palliative care but is suffering now in 2020 with the war in NKR. Can you tell our readers a little bit about the Nagorno-Karabakh war and how it affected your team and the care you provided to children and young adults with cancer?

Dr. Gevorg Tamamyan: So, Nagorno-Karabakh Republic is located in South Caucasus. It's historically inhabited with Armenians and it has been a land for wars for many years.

The first war, what I observed, started in the late 1980s. I was just born a few years ago and I cannot clearly say what happened, but I know from the history definitely. There were massacres of Armenians and the war erupted. But for many years, for three decades, the situation was unstable.

And during the COVID 19 pandemic, Nagorno-Karabakh Republic was attacked by Azerbaijan, supported by Turkey. And just to kind of illustrate what the situation is, there are like 100- 150,000 people residing there. So, this is a small country. It was attacked and there were thousands of people killed and tens of thousands displaced. So, this was the sad reality, what we have seen, of course.

One day I was in Stepanakert, the capital of the Nagorno-Karabakh Republic when bombs were falling on the civilian buildings. I was on the ground floor of the hospital, and I was seeing how these wounded people, civilians, were coming to the hospital. It was really, I mean, my English is very poor to describe all this situation, but back in the hospital, we had a lot of patients from Nagorno-Karabakh and we were seeing their struggles. It was not only from cancer. Some people were losing part of their families, and some of their family members were at the worst stage. And kids, I mean, there was no smile on the kids' faces. It's difficult to describe.

I think it happens with every war, anywhere in the world. And we decided to describe this young boy's story and through this story, to deliver the message about the war, about cancer, and about how patients with cancer struggle during this crisis and these difficult times.

Dr. Lidia Schapira: You tell in your story very movingly how difficult it was for this young man to run out of his pain medication, to also run out of all of the sources of delivery of palliative care. And also, you tell us a little bit about how this made your team feel, that you were struggling with the war, you were struggling with this idea that you couldn't relieve the symptoms and pain of your patients.

Tell us a little bit about how your team struggled through this and what helped you as you went about your work every day?

Dr. Gevorg Tamamyan: Our hospital is a major hospital not only for pediatric cancer. We have the only pediatric cancer center located in the hospital, but also our center, the hematology center, where our pediatric cancer center is located, is the major and the main blood bank.

So, we were kind of primarily involved in saving patients' lives through the blood bank, of course, because all the people were coming to donate the blood and we were sending this blood to different hospitals. And I must confess that this pain medication and palliative care is an issue not only during the war but also during peacetime in many resource-limited settings. But during the war it becomes dramatic. And for the people living in the war area, in the region affected by conflicts, it's almost impossible for them to receive this treatment.

I've seen the stories from Syria, back, let's say ten years ago, photos from the hospitals, and photos of kids who were not able to receive the treatment. Let's say a kid with lymphoma with all the chances to get cured and he or she is not receiving the medications because there is a war, because people fight, and people are dying and kids are dying in pain because they are not able to receive their opioids, their painkillers. So, for doctors, of course, realizing this is very difficult.

And the second one, because the supply chains are kind of disrupted, it's difficult to get the medications on time. Then many doctors leave the hospitals and go to the war front and let's say, do surgeries there or just help the wounded people. Sometimes we're out of the staff or out of the specialists, some of our surgeons. We are a small country and there might be four narrow specialists, one or two specialists, and when your specialists are at the military hospitals, how can they operate? How can they do surgeries for the kids? And of course, everyone has a relative, everyone has a friend who is there and you are thinking about them even if you are not there.

So, from all sides, you are depressed. And that's the war. That's how the war looks. In the cities which are under the bombs, of course, the situation is even more difficult than what we see in different parts of the world.

Dr. Lidia Schapira: The reality of the war is always awful and I really admire your ability to bring this to our attention in such a clear way. Let me ask the question again. How do you and your colleagues get through the day? And I imagine that you're probably sort of reliving the trauma in a way when there is a new war in the world, as there is now in your general area of the world. How are you all doing?

Dr. Gevorg Tamamyan: With every new war, including this new war in Ukraine, I mean, people are dying. You see these images from the cities. The worst thing is that you know these people are from both sides and you have friends from both sides, and even these fighting sides, I mean, they were brothers a day ago. And you see how kids are dying, you see how young people are dying, and you see displaced people who are leaving their houses. It's really very difficult.

In the meantime, the situation here is also not calm. During the last months, several times we observed a similar situation in Karabakh, again, wherein several villages people were displaced. It's kind of a no war, no peace situation. And can you live with the thought that the war is going to begin again soon and you don't know what's going to happen? That's the reality.

Dr. Lidia Schapira: So, you bring our attention, Gevorg, to the enormous disruption in care for children and adults with cancer caused by war, both the interruption of cancer-directed care, but also the interruption of palliative care. There's a general feeling, I think, among many oncologists throughout the world of wanting to help. How can people help?

Dr. Gevorg Tamamyan: It's very difficult, to be frank, to single out a solution, but there are different ways. First of all, I think one kind of help would be just to write an email and say, ‘How are you doing?’

Because in the world, what we are lacking the most, it's paying a little bit more attention to our friends and neighbors and people we know. And of course, with our routine daily life, we are so busy, but even a small message can help the people with the stress. At that time, maybe someone will say, “Okay, do you have ten ampoules of this or fractions of this drug?” Or something like that. “Or would you give me advice on how I might manage this child?”

But of course, my suggestion would be that all the professional societies and humanitarian organizations, and major cancer institutions put their efforts into trying to find systematic solutions for how it is possible to help patients or professionals in the conflict-affected regions, and how to help displaced populations. And not only when the conflict erupts or war erupts because there are conflicts all over the world right now.

For example, people in Syria, right? They experience so many struggles. I was reading in the ASCO post, there was an editorial, that tens of thousands of professionals left Syria. So, people are left without basic health care, and similarly in Iraq, Afghanistan, Ukraine, and in many parts of the world.

So, I think a systematic effort is needed to help the patients and professionals. I'm sure when we get together, we'll find better solutions. But of course, the best way is to keep the peace. But sometimes it's out of our reach.

Dr. Lidia Schapira: That's right. So, some things are out of our reach. But one of the things that we can all do is, as you so beautifully articulated, to show some solidarity and to start by reaching out to a colleague we know or to somebody who is in that area just by checking in, ‘How are you doing?’, ‘Is there something I can do to help?’

And then, of course, through the power of these stories, I think to sort of help people understand that there are ways of getting involved, as you say, to think about creating perhaps a better infrastructure to deal with both cancer care and pain and symptom management for all the people affected by and displaced by war.

Dr. Gevorg Tamamyan: Yeah, I agree, definitely.

Dr. Lidia Schapira: Do you have a final message perhaps for our listeners, Gevorg? Let me give you the last word.

Dr. Gevorg Tamamyan: We are talking about war and we are talking about cancer. My only wish is for there to be peace in the world and there is a cancer-free world, of course.

Dr. Lidia Schapira: Thank you so much for taking the time out of your busy schedule to share your thoughts. Thank you so much to you and your team for sending this beautiful essay to us.

Until next time, thank you to our listeners for listening to JCO’s Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review on Apple Podcasts or wherever you listen. Be sure to subscribe so you never miss an episode.

JCO’s Cancer Stories: The Art of Oncology is just one of ASCO’s many podcasts. You can find all of the shows at podcasts.asco.org.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity or therapy should not be construed as an ASCO endorsement.