Ukraine has a special place in my heart, in my career, and in my life.
A Ukrainian breast cancer project first introduced me to the field of global oncology, along with experience of seeing first-hand the challenges (and rewards) of providing cancer care and conducting cancer research in a setting of constrained resources.
From my very first visit, I was astounded by the hospitality, ingenuity, and resilience of the Ukrainian people. I became fascinated by their history and culture, along with their contributions to art, science, and humanity.
I established strong connections and friendships in Ukraine that last to this day, making the senselessness and brutality of Russia’s recent invasion, and particularly its impact on cancer patients and health care providers in Ukraine, especially distressing and personal for me.
The Breast Cancer Assistance Program
In 1997, the US Agency for International Development (USAID) awarded $3.8 million to assist the Ukrainian Ministry of Health in strengthening its breast cancer services.
I was asked by the Program for Appropriate Technology in Health (now known simply as PATH) to serve as a medical oncology consultant on this Breast Cancer Assistance Program.
The three-year project was developed to prepare Ukraine for what was expected to be an increase in breast cancer incidence post-Chernobyl (a fear that never actually materialized). Programs were developed in collaboration with Ukrainian oncologists to address breast cancer screening, diagnosis, treatment, and rehabilitation.
On my first trip to Kiev, the PATH project director, Rosh Doan, and I were met on the steps of the National Cancer Institute of Ukraine by reporters. I was asked, “Can you please tell us about this American project, but don’t use the word ‘breast’ and don’t use the word ‘cancer?’”
I left it to my interpreter to figure out how to accomplish that, and was never sure exactly what she said or how the project was described by the press.
It was immediately clear that there was limited public discussion of the disease and its treatment, and that we would need to better understand the state of both cancer care and cancer information in the country in order to succeed.
In our initial assessment of treatment practice in Ukraine, we learned that treatment decisions were primarily based on drug cost and availability, not science or evidence. The number of cases treated and exact regimens used were difficult to determine.
On more than one occasion, I was asked, “Do you want the official numbers or the real numbers?” Very low doses of chemotherapy were being used, with the explanation that Ukrainian women could not tolerate “Western” doses.
Improving early detection of breast cancer was deemed a high priority.
Therefore, a pilot was launched comparing screening mammography with clinical breast examination in Chernihiv in the North and Lviv in the West. We discovered on a site visit that the project budget had mistakenly not factored in the cost of the mammography film, and the solution had been to ask women participating in the screening to self-procure their own film.
Somehow they figured out how to do that—just mind-boggling to me, and clearly demonstrating the ingenuity and perseverance of the Ukrainian people.
The pilot ended up showing that screening mammography was neither cost-effective nor sustainable with Ukraine’s level of resources at the time. But the project was still a success—helping define optimal utilization of scarce resources, and providing training in diagnostic mammography, needle biopsy techniques, and clinical breast examination to health professionals.
Education and experience with clinical trials were also felt to be a high priority for Ukraine. In response, Dr. Natalya Martsynkovskaya, from the Odesa Oblast Oncology Center, and I designed a preoperative chemotherapy trial to evaluate conventional “Western” chemotherapy, using standard Ukrainian supportive care measures.
The primary objective was to assess the safety and toxicity of this regimen (addressing whether “Western doses” could in fact be tolerated by Ukrainian women or not). The study also aimed to introduce physicians to multidisciplinary care and clinical trials standards, including creating dialogue between physicians and patients through informed consent.
Dr. Martsynkovskaya was invited to present the results at national and international conferences. From one of her presentations:
We have gained valuable insight into the challenge of conducting clinical trials in Ukraine, including issues of informed consent and acquisition of chemotherapy drugs. For the surgeon, neoadjuvant therapy shrinks the tumor mass, permitting breast conserving surgery, correspondingly improving the quality of life of the patient. This project will impact oncology practice at the national level in Ukraine, and benefit all Ukrainian women. It follows that neoadjuvant chemotherapy is a necessary part of the combined treatment of breast cancer with local spread. Therefore, the treatment strategy for such patients should be prescribed only by a team of specialists: pathologist, surgeon, chemotherapist, radiation oncologist.
I’m happy to see that perhaps, at least in some part due to this experience, Ukrainian sites are now regularly included in many large-scale, global oncology pharmaceutical trials.
One of the sub-projects of the Breast Cancer Assistance Program, with the most durable impact focused on facilitating dialogue between breast cancer patients and their health care providers. Led by Amie Bishop, of PATH, focus group discussions were conducted with women who had experienced breast cancer.
Patients reported that they often were not told they had cancer, even when undergoing mastectomy. Many felt that they received false hope and inaccurate information. Most wanted to know more about their diagnosis so that they could plan the future with their families. In parallel, surveys were conducted to understand health care provider attitudes and practices related to patient care.
Although some health professionals expressed support for more candor in discussions with patients, the cultural norm and official policy did not support discussing the cancer diagnosis with the patient.
The concern was that such frankness would dash the patient’s hope for survival (a theme carried over from the Soviet days, as well-described in Solzhenitsyn’s “Cancer Ward.”)
In response, the project focused on identifying patients, doctors, and nurses willing to experiment with education and communication. Patient education materials were developed aimed at helping women understand their disease and participate in their own care.
Patient-physician dialogue was encouraged and clinicians were provided training and tools to facilitate these discussions. Although doctors were initially averse to working with breast cancer survivors, they began to solicit their help, especially in convincing women to seek necessary treatment.
The project also introduced the idea that women could help each other face the disease by inviting breast cancer survivors from the U.S. to take part in seminars with Ukrainian breast cancer patients and medical personnel, and by supporting a visit to meet breast cancer survivors in Poland.
Inspired by this interaction, Ukrainian cancer survivors organized support groups across the country, named the Amazonki, after the mythological female warriors who would cut off one breast in order to better use their bow and arrow.
In October 2001, the Amazonki received a permit for a “March for Life and Hope.” Breast cancer survivors, family members, and healthcare providers marched down Khreshchatyk Street, the main street in Kyiv. There were pink balloons, a marching band, and presentations at the city center—raising awareness for breast cancer and celebrating cancer survivors.
A public demonstration by a non-governmental organization would have been unheard of prior to the fall of the Soviet Union, and such permits were still very difficult to obtain at the time. As the patient advocates told me, “We need to do this for our daughters.”
The rapidity by which the patient support, survivorship, and the advocacy movement developed was astounding. While in 1997 no breast support groups (or even the concept of patient support systems) existed in Ukraine, by 2001 Amazonki breast cancer survivor groups had been formed across the country.
This experience cemented the concept for me that patients are critical partners in improving cancer outcomes globally, and that peer-to-peer support and patient advocacy must be considered key components of a comprehensive cancer control plan.
Developing friendships and a love for Ukrainian culture
It was during the “off hours” portions of my time spent during site visits for the Breast Cancer Assistance Program when my love for Ukraine and its people blossomed.
I found that Ukrainians are warm, generous, and hospitable—ready to offer their last piece of bread or their warmest sweater, even when they themselves are hungry or cold. They strongly value friendship, comradery, and family.
Food is an important part of Ukrainian culture. We had wonderful feasts with Ukrainian dishes, including my favorites, tasty vareniki (dumplings) and traditional stuffed cabbage rolls called golubtsi. At breakfast, I always looked forward to a special Ukrainian poppy seed roll (makivnyk).
At one memorable meal in Lviv, at the home of a colleague’s very distant relatives, I very much miscalculated how much more was to come after filling up after the 3rd or 4th course (they must have been cooking for a week!).
Each meal always involved toast after toast after toast, and the toasts got longer as the night went on. I learned that the third toast is dedicated to the ladies. And, as a good guest, I also learned my own toast to contribute (in Russian, but now I need to re-learn in Ukrainian).
The oncologists and PATH staff regularly arranged special tours and events, exposing me to the richness of Ukrainian culture and history. I was treated to a play at the Odesa Opera Theater—a comedy about family life that somehow, despite being in Ukrainian, transcended the language barrier and was totally understandable and enjoyable.
I was invited to concerts with Ukrainian folk music and dancing. I attended a soccer (football) game, wildly rooting with my friends for Kyiv Dynamo (I still have my blue and yellow Dynamo scarf!).
I was invited to visit the studio of a prominent artist in Odesa, Sergey Savchenko. He was an abstract painter and member of the underground Odesa nonconformist movement whose artists refused to conform to socialist realism, the officially approved art in the Soviet Union. The non-conformists staged illegal “apartment exhibitions” of their works and risked being arrested.
I admired one painting in his gallery in particular, and he presented it to me as a gift, despite my insistence on purchasing the painting. I had to be instructed by my accompanying Ukrainian friends that it would be an insult to continue to insist on paying him. It hangs in a prominent place in my dining room.
Over time, I became increasingly comfortable exploring Ukraine on my own. I learned the letters of the Cyrillic alphabet and began sounding out the words on building signs. I learned key words so that I could barter at the markets and craft stalls. I became comfortable jogging near my hotel once I could read the street signs and knew when to turn to head back (no iphones or GPS back then!).
Restaurants and tourism were not common in the late 1990s, but that was changing. I’m embarrassed to report that the first restaurant I ventured into on my own in Kyiv was a McDonald’s that opened in 1997 (the first in the country, and a big deal at the time).
I learned that if I said “Big Mac Menu” at the register, I got food! It was fun to see how much excitement the Ukrainians had for the arrival of American fast food in Kyiv, and mostly what it meant with respect to opening back up to the West.
PATH Project, 1998.
With several entrepreneurs venturing into the hospitality industry and restaurants popping up in the cities, I quickly learned how to read key items on a menu so I could branch out beyond hamburgers.
Some of my first words were pyvo (beer) and khlib (bread). Maybe not a whole lot more nutritious than McDonald’s, but at least more authentically Ukrainian!
I loved to walk along the craft stalls on the Adriyivskyy descent, a windy steep road connecting the upper city of old Kyiv with the Podil (lower city). Stalls were full of traditional Ukrainian embroidery, wood carvings, and lots of old Soviet medals that I was warned were illegal and could result in an arrest at customs!
My favorite souvenirs were the pysanky, intricately patterned Ukrainian Easter eggs made using an ancient wax batik method. I had my favorite pysanky artist who I tried to visit on each trip to Kyiv. Pysanky and other symbols of faith had been banned during the Soviet era in an attempt to eliminate all religion, but Ukrainians secretly continued to make the eggs in their homes, and the tradition survived.
I have a large colorful bowl of pysanky, the result of many visits to my favorite artist’s stall, on display in my living room.
Visits to the churches and monasteries of Kyiv, with their golden domes and bell towers, taught me much about the history of Ukraine. St. Sofia Cathedral, a UNESCO World Heritage Site with beautiful mosaics and frescoes, was built during the reign of Yaroslav the Wise in the 11th century.
The beautiful Bell Tower at St. Sophia is one of my favorite landmarks in Kyiv. While it was able to survive the Soviet era (when many religious buildings were destroyed), I am fearful about it surviving the current invasion.
The gorgeous Cathedral of St. Michael’s Golden-Domed Monastery, overlooking the Dnieper River, was demolished by the Soviets in the 1930s, but later rebuilt after Ukrainian independence.
The Kyiv Pechersk Lavra (Monastery of the Caves) founded in 1051, another UNESCO site, is an amazing complex. On one visit I was asked by a monk to cover my hair before descending to visit the catacombs. I was ready to comply, having come equipped with a scarf.
My host, a Ukrainian doctor, objected—telling the monk that by forcing such rules on visitors and the people of Ukraine and by blocking access to Ukrainian history, he was in the same class as the previous oppressors—including the Soviets, not to mention Peter I and the Nazis.
There was a mysterious fire during Peter I’s reign, and the Soviets had confiscated relics from the Lavra, converted the monastery into a museum complex emphasizing anti-religious propaganda, and removed all the bells from the bell towers. Wow—such a history, it was amazing that the monastery was still standing. (I wore the scarf anyway).
Understanding the atrocities of Ukraine’s past has helped me understand the resilience I see today in my Ukrainian friends and colleagues, and their fierce national pride and determination to hold on to freedom and independence at all costs.
I visited the Memorial in Commemoration of Famines’ Victims, dedicated to the victims of the Holodomor (the Great Famine), Stalin’s failed experiment to push the grain quotas of the collective farmers that resulted in the loss of millions of lives due to starvation.
I visited the Ukraine World War II Museum, and Babi Yar, a ravine where many Jews and locals were killed during World War II. I visited the Ukrainian National Chernobyl Museum on several occasions, trying to understand the horror of the lies and coverup of 1986 Chernobyl disaster and its consequences.
I’ve returned to Ukraine many times since the conclusion of our original breast cancer project, connecting with PATH friends, oncology colleagues, and providing encouragement to breast cancer patients and survivors.
I visited Kyiv in 2015, not long after the violent events of the Maidan Revolution of 2014 that culminated in the ousting of the Russian-backed president, followed by Russian military intervention and the annexation of Crimea by Russia.
I spent some time in Maidan Nezalezhnosti (Independence Square) in the heart of Kyiv, which was lined with makeshift memorials, flowers, and photos of the anti-government, pro-democracy protesters killed in the revolution.
I met with a group of patient advocates for a somewhat somber meal, noting a change in their morale level, a depression about the turn things had taken in their country, the increase in poverty and corruption and unease. Ukrainians are tough and resilient, but there was a profound sadness from the direction things were taking.
In the eyes of my Ukrainian friends, the Maidan Revolution in 2014 and the annexation of Crimea marks the beginning of the current war with Russia. Ukraine is an ancient nation and at the same time also a very young country, celebrating just 30 years of independence from the Soviet Union in 2021.
For centuries, Ukraine has been invaded and pillaged and divided among its neighbors. And despite all that, Ukrainians have retained a strong sense of national identity and pride.
Supporting powerful Ukrainian breast cancer advocates
My experience with the Breast Cancer Assistance Project led me to initiate a series of Eastern Europe/Central Asia Breast Cancer Advocacy Summits, bringing together leaders of breast cancer patient advocacy and support groups to share the lessons learned and create regional dialogue.
I would later name this project the Women’s Empowerment Cancer Advocacy Network (WE CAN), with cervical cancer added to the mission given its high incidence and mortality rates in many of these countries.
The first summit, attended by representatives from nine former Soviet countries (including Ukraine), was held in Vilnius, Lithuania, in 2003. The Lithuanians surprised the group by unveiling a “Pink Ribbon Van” that was entirely donated (including gas and oil, educational pamphlets, and a driver), decorated with the Nedelsk logo and a big pink ribbon, and designed to travel the countryside with a health care provider promoting women’s wellness.
The attendees, not too far removed from their Soviet days, were simply shocked that something like this could be done entirely through donations and without the government’s involvement. Philanthropy and volunteerism were foreign concepts to most, and a spark was lit.
The success of the first conference led to a second summit in 2005 in Kyiv, and another “March for Life and Hope.” The summits continued biennially, rotating between host countries throughout the region. In 2007, a summit was held in Minsk, Belarus in partnership with the support of the U.S. Embassy (they deemed this a democracy-promoting event, justifying their support).
Because the Belarussians couldn’t get a permit for a public march, the U.S. ambassador, Karen Stewart, led the delegates on a walk from the conference hotel to our dinner venue through a public park. Most delegates were wearing pink scarves or jackets, and the size of the group caught the attention of many in the park who stopped to ask what we were doing, then wanting to know more about breast cancer. A small act of civil disobedience for a good cause.
At the 2013 WE CAN Summit in Tbilisi, Georgia, we were honored to have U.S. Ambassador Richard Norland at the opening ceremony, who in his official remarks told us that our conference was doing more to promote peace in the region than any effort he had seen.
We were able to unite patient advocates from warring countries—including Russia, Ukraine, Georgia, Armenia, and Azerbaijan—against a common cause: cancer. The cancer diagnosis connecting these women proved to be a far stronger bond than the politics of their countries.
WE CAN returned to Ukraine in 2017, giving me a chance to reflect on how far the patient advocacy movement had evolved since my first trip there 20 years earlier. The advocates were increasingly willing to publicly acknowledge their fight with breast cancer, they were playing important roles in furthering public education, and they were influencing public policy in their countries.
They were contributing to sustainable improvements in breast and cervical cancer prevention, diagnosis, treatment, palliative care, and survivorship. It was wonderful to see the tremendous progress made by these patient advocates, and also somewhat sobering to recognize the challenges that remain for all of us.
Reaching out during the present crisis
When I learned of the impending Russian invasion, I reached out to friends in the U.S. and Ukraine, asking if they and their families were safe, and what I could do to support them. I’ve gotten updates from several—one holed up in a parking garage whenever the gunshots and blasts come close, another whose safety plan is to hide in her apartment’s basement.
Understanding the atrocities of Ukraine’s past has helped me understand the resilience I see today in my Ukrainian friends and colleagues, and their fierce national pride and determination to hold on to freedom and independence at all costs.
Just prior to the invasion, when the Russian troops were lining up on the border, one of my colleagues told me, “My family in Kyiv doesn’t want to talk about war—they want to talk about family. Ukraine has been invaded by so many over the years and no one has ever succeeded in crushing our people. We are resilient, we will survive.”
This morning, I heard a cancer surgeon in Lviv, a colleague I originally met during the Breast Cancer Assistance Project, describe how western parts of Ukraine are receiving a huge influx of patients from the east. How cancer surgeries were initially put on hold, but have now at least tentatively resumed. How many can’t get to the clinic due to public transportation issues and checkpoints. He described a spirit of shock, a lack of information, and profound uncertainty about what tomorrow will bring.
Another colleague with family in Ukraine replied, “The best way to help/support us is to spread the word about this terrible invasion. The world needs to know that our children are dying and Russia is sending their children to fight and die without cause… a mother’s tears are the same despite which side of the border they are on.”
This helped me put things in perspective—most humans want peace, not war.
