A life devoted to helping women fighting for life

  • 2011-11-17
  • Interview by Linas Jegelevicius

There are over 100,000 women in Lithuania who have fought, or are still fighting, breast cancer, one of the most spreading forms of cancer in the country. Every year, approximately 1,300 breast cancer cases are diagnosed in Lithuania and, on the saddest end of the statistics, every second woman succumbs to it, making this ratio one of the most disastrous in the entire European Union. Breast cancer prevention works miracles. Agne Zuokiene, a journalist by profession, ten years ago kicked off a project raising public awareness in the fight against this killer disease. Over the years, it has grown from a single person’s project to a wide breast cancer prevention campaign known under a single word - Nedelsk (Do not delay) - which every year reaches out to more women, even in the most rural locations, saving lives in the process. Zuokiene sat down with The Baltic Times to share some thoughts on her endeavors.

When did you first hear about cancer? In your childhood?
To be honest, I grew up without knowing about it until my mother’s several friends fell ill with cancer and, subsequently, died. It has left a big mark on me, bringing an understanding that cancer is difficult, incurable and treacherous.
Why did you, instead of choosing a doctor’s profession and dealing with the pernicious illness daily, decide to become a journalist?
Twenty two years ago, when I was choosing my profession, I thought that Lithuania needed freedom of speech the most. I thought I was a brave daughter of exiles, who believed in the country’s independence and future. I have to admit today that, though Lithuania has generally coped well with its challenges, many mistakes have been made that we do not want to admit, neither to ourselves nor to others…

Can you recall the start of the Nedelsk project? How did you come up with the idea?
There was an ordinary October, which is regarded as breast cancer prevention month around the world. Back then, there were neither pink ribbons, a signature color of our project, nor a belief that breast cancer can be cured. I had never been impressed by the cocktail parties in foreign embassies in Vilnius, but, I remember, in one of the parties, the then-Austrian ambassador’s wife asked me about the breast cancer situation in Lithuania. I had to admit to her that it was the worst in the entire Europe, with Lithuania being a leader in breast cancer–related mortality. It was then when I started searching for an answer as to why Lithuanian women did not love themselves, and why the illness was usually diagnosed so late then… So I decided to get my friends together, and were joined by many volunteers, and we all decided to fight the myths about breast cancer, patching the gaps of our state health care.

Who exactly came up with the catchy name for the breast cancer prevention project, Nedelsk?
I did. Today the name is widely recognizable and accepted. Today I think that some higher force led my hand to the name. Besides, I added the sentence: “For us and those who love you” to the word that has become a widely recognizable name of the project.
What did you mean by the words “For us and those who love you”?
I meant that, if women keep thinking all the time only about their husbands, children, home, gardens and cattle and if they fall ill, the three home corners she supports, often alone, will start shaking. It is very important for women to take care of their health, for the sake of others.

What were breast cancer statistics, prevention, trends and perceptions before the project?
There was no breast cancer prevention 9 years ago. There was a wide understanding that every woman dies from breast cancer. What made things worse, post–surgery women, with their cancerous breasts cut off, usually would be ridiculed and sneered at. Their husbands would be teased as well, particularly in the countryside. I still remember well a sentence that caught my attention when reading confessions of American women, breast cancer survivors: “Damn those husbands who care only about women’s breasts…” Nevertheless, I have to admit a lot has changed over the 9 years – women are not afraid anymore of speaking about their cancer; we more rarely stumble upon advanced forms of breast cancer, which make up roughly 7 percent of the cases now. In addition, to the joy of doctors and their patients, doctors, more and more often, succeed in diagnosing the so–called “zero” stage cancer, which is absolutely curable. Obviously, 100 years from now, people will die from a cold or old age, but not from cancer.

Do you happen to meet women who, having found out about the illness 9 years ago thanks to your project, have overcome this life challenge? What do you usually speak about upon meeting them?
Nedelsk aims at, what I call, patching our medicine gaps and shortages. Back then, we tended to criticize them, or picket in protest of them. My position was another – to fill the gaps uniting our efforts, getting together our supporters, doctors and volunteers. Over 9 years the Nedelsk project has checked over 67,000 women, 630 of whom were detected with some breast cancer symptoms. Not all of them, unfortunately, have been rescued; some of them have given up, but most of them have survived.

How did your perception about cancer change over the years?
Frankly, earlier, I saw cancer as a fatal decision of fate. However, now I look at it philosophically. When I was an entrepreneur, I would put together plans for larger revenues, profits and a larger flock of employees. That is exactly the philosophy of a cancer – to conquer a bigger part of the human body, achieving larger influence and acknowledgement. The fight against cancer is extremely hard, as it requires annihilating cancerous cells, simultaneously exhausting the body, but leaving hope and strength for the good cells. The process involves way more complex combinations than a party coalition forming; therefore, a person’s win against cancer seems to me to be much more significant and important than squabbles and quarrels in our Seimas.

What are cancer statistics in Lithuania today? How much has cancer prevention and treatment improved?
As far as cancer prevention and treatment are concerned, Lithuania is more or less on par with other EU countries. I would discern some differences on the political and state levels. Having reviewed Lithuanian laws and sub–laws, it is hard not to fight the impression that Lithuanian doctors do not have many rights or options in choosing a treatment strategy or lab tests. There are so many regulations in the process that cannot be bent in any way. That is the weak side of our approach. Global cancer treatment practices today stress personalized treatment and empower doctors to assume more powers in decision-making. For example, in the U.S. and in the largest EU countries, a tumor is being tested and chemotherapy is being chosen according to the tumor’s reaction to the 8 main medicines accepted to fight it. Regrettably, such complex tests, requiring large resources, could not often even be carried out by Lithuanian doctors, who are usually embroiled in excessive cancer treatment regulations and who have to waste their time in explaining why they administered that particular drug, but not another.

During a recent trip to the U.S., I visited the largest breast cancer treatment clinics. The breast cancer management they have over there, including a complex approach to a patient, not a narrow approach like in Lithuania, assigning a special cancer treatment manager leading the woman from the beginning till the day she is pronounced cancer free, has justified itself. These are the health models that we have to pursue in Lithuania as well. Our task is to diagnose cancer as early as possible in order to save a woman’s breast. We want women to receive the best medicine. The statistics shows that breast cancer mortality in late stages has declined by half over the recent 5 years. With cancer being detected at earlier stages, more women are able to save their breasts. That is very positive.
God forbid you will hear some day the news yourself… Have you ever thought what your reaction would be? Would you be scared?
I cannot pretend – it would be horrible. Still, seeing cancer over the years, I think I have been well acquainted with it. If, upon an encounter with the illness, I decide to fight it and win, I would do so employing medical assistance and hunger. The strength every woman needs upon hearing the news has to lie inside the woman. We cannot oblige people in her environment to take over even a part of her problems; however, it does facilitate the fight a lot… If it were up to me, I would publicly announce phone numbers of people who have been diagnosed with cancer for one reason – maybe someone from their family, relatives or acquaintances would strike a friendship with them, which is so important to the patients.
How many people are involved in the project today?
Nedelsk attracts people like a magnet. We have several hundred doctors and volunteers that contribute to the project. They are very special people, as they give much more to it than they receive from it. Nedelsk unites very good-hearted people, and that is my biggest achievement. I always know that I always have a better and more real alternative to my job in Seimas - my Nedelsk team - which I will rejoin after my tenure in Seimas is over.
Did you ever give a thought on how you are more famous to the public: as the Nedelsk project spearhead and developer, or wife of the politician Zuokas (former parliamentarian and current Vilnius mayor)?
Family is the most important thing to me; therefore, if I am known to somebody as only a politician’s wife, let it be… However, Nedelsk has become a part of my heart and life, engulfing my parents, children and friends.

Does Lithuania have a health promotion policy at the state level? What are the state leverages to encourage its citizens to be more conscious about their health?
In fact, there are many health conceptions; however, they are practically ineffective declarations. Considering that our Ministry of Health allocates only a few percent of its budget for illness prevention and prophylactics, it could be rightly called a ministry of “illnesses” and “death,” but not of health. When politicians and officials come to an understanding that a health budget has to be planned for 10 years, and that resources invested into healthy lifestyle promotion and illness prevention is a long–term investment that will pay off in the end, we may see changes in the policies.