Nafije Latifi, founder of the Kosovo Center for Fighting Breast Cancer “Jeta/VITA,” who personally struggled with breast cancer in 2004, admits that she hesitated to go to the doctor after her first doubts because she didn’t have enough information about where to go or what to do.
She explains: “I personally experienced a shock; it was like my life stopped. I reflected for a while, wondered what I should do with myself, I made some calculations, wondered if I should go to the doctor, if it was worth it or not. I was on top of my career, and everything stopped for me. I knew that it was a difficult illness and that we didn’t have doctors specialized in the field, that I would have to deal with long treatments and huge bills, that I needed to go abroad, because there were no oncologists here at the time, there were no institutions, not even a way of diagnosing it, let alone treating it. It has been very hard to deal with this diagnosis but life goes on.”
The number of people diagnosed with breast cancer, a condition that mostly affects women, is not known in Kosovo, but 230-240 new cases have been registered for the first time this year in the Oncology Institute.
This number is not published yet, but Latifi thinks that it is similar to the number of the previous years, since the number of women registered in 2014 was 224, whereas in 2015 it was about 230. Women who are registered for the first time are considered new cases, they were diagnosed with cancer this year, and went to the institution to get the different therapies they need.
Despite the fact that women represent 51% of the population of Kosovo and that the illness is spreading at a fast pace, the number of the women diagnosed with breast cancer is not known, since some of them hesitate to go to the competent institutions.
Latifi claims that “Based on regional statistics, one in ten women here are diagnosed with cancer, whereas in more developed countries, the statistic is one in eight. But in Kosovo, we are fairly young, our population is young, therefore we have fewer people diagnosed with breast cancer because breast cancer is more common in women around their fifties, who are experiencing menopause.”
According to her, we also have 20, 30 and 40 year olds diagnosed with cancer, which is below the expected age for a woman to be diagnosed, but these cases are not very common.
From the talks she has had with other women diagnosed with breast cancer, Latifi says that a considerable number of them hesitate to get proper examinations because of their fear, lack of information about the treatments, and the fear of the severity of the prognosis.
Latifi says: “We don’t have the health education, information, or access to regular check-ups for an early diagnosis that the western world has. We don’t have the necessary equipment, so if you go for a check-up your name will be added to a waiting list, and there are some women who can’t wait and others who can’t afford to go to a private hospital. Women also fear the diagnosis and how they will deal with it.”
If there was sufficient health education and more information, if there were check-ups for diagnosing breast cancer early, if girls were obligated to get an ultrasound scan from the age of 20 and women to have mammograms from the age of 40, Latifi says that this illness would be diagnosed earlier.
She says: “Scanning equipments detect cancer before any obvious changes in the body occur. This is the best way to detect this illness on time so the survivors will live a longer life with better quality.”
Pathologist Lumturie Luci, who does biopsies, says that women hesitate to go to the doctor because of our patriarchal society and the lack of information about this illness. Therefore when women touch something different in their breasts but it doesn’t hurt, they neglect it until it hurts, which is when the cancer is at a more advanced stage.
Luci adds: “Women in general run away from facing this issue, they are afraid of the results and consequences it may bring. They may keep the changes in their breast to themselves for years and not visit a doctor since they want to avoid facing the results.”
According to her, another important reason why women don’t get examined is the level of their education, since the women who come from rural parts usually have more advanced tumors than the ones who come from the urban parts, where education is better.
She states that another reason is the lack of information, and that there should be more efforts to raise awareness about breast cancer and openly speak about breast cancer more, not only during the campaigns.
Luci claims that in the last years the number of women with breast carcinoma has grown, and that this growth is relative. This is because even though more women are diagnosed now than compared to the 60s and 80s, they are registered in Kosovo, in contrast to the other years when many women went abroad to be diagnosed and treated.
Latifi partially agrees with this statement, saying that more women are registered with breast cancer but this growth is not alarming.
Latifi says :“Earlier women didn’t go to the doctor because they didn’t know where to get treated, sometimes they hid their condition, and it was simply too late to go to the doctor. However, most importantly there was no Oncology Institute, no address for the people with cancer to go to. The reason they hid it has to do with the mentality, some years ago it was a taboo.”
On the other hand, Luci claims that our mentality makes it difficult for us to experience illnesses, because there is not just one family suffering but four or five other families suffering as well, due to our close relations with each other.
Lindita Rugova, the Dean of the Philological Faculty, who beat cancer in 2011, says that at the beginning, she didn’t tell her kids about the details of her illness and she didn’t mention the word cancer at all, she didn’t even tell her mother when she was diagnosed until after the operation. Although she tried to stay strong, she says that her family got very worried, and that made her battle harder.
She says that she was “determined to fight cancer, period.”
She adds: “It means that I wasn’t counting on anyone but myself. It is true that you are afraid and there are some hard moments, but you have to say “stop,” you are the one who stops or allows yourself to get depressed, you are that person yourself.”
Rugova says that in Kosovo women are used to their husbands, mothers-in–law or fathers-in-law being the one to tell this news, it’s not the woman who dares to “get the evil out of the house.”
She says:“The woman should keep it a secret because of the mentality we grew up in. When we think of the villages, women there don’t have their own salary, they depend on others, and they haven’t read anything about the illness so they don’t know what it means to have cancer.”
Economic status is another factor why women hesitate to get checked-up, since examinations cost a lot, and a lot of families can’t afford them.
Having this in mind, in March, the women’s association “Jeta” in cooperation with Dr. Msc. Sami Bytyqi, gave 300 women in Deҫan free check-ups with the most advanced Echo Elastography technique in only 3 days. From these 300 women, 3 were diagnosed with early-stage cancer, whereas 5 were in the transition phase.
Their motto was “March isn’t only for giving flowers [on International Women’s Day] but also for breast examinations for early illness diagnosis including cancer.” Even though their aim was to examine women on social welfare, other women who have good economic status went as well. So many women showed up that a lot of them didn’t get a chance to get examined.
The project was halted because Deҫan stopped financially supporting “Jeta” like they promised they would, and since it was quite expensive, the doctor couldn’t afford to continue it by himself.
Rugova and Luci engage in many awareness campaigns, from both non-profit organizations and other relevant institutions. Rugova stresses that there needs to be more awareness campaigns, especially in the rural areas where unemployment rates are higher and there are more problems.
Furthermore, Luci and Latifi suggest that women should perform self-examinations and also get medical examinations so they can get diagnosed as early as possible, and have lighter, shorter, and less expensive treatments.
Latifi adds: “Women should take care of themselves, perform self-examinations, get regular check-ups and diagnose the illness as early as possible, when they can save themselves with a small medical intervention and prevent further difficult treatments.”
Gentiana Maxharraj
