“Life exists both during and after chemotherapy”: three stories of women who received a “breast cancer” diagnosis and achieved high-quality treatment

What is the problem?

According to operational information from the National Cancer Registry, in 2022, 168,836 people, among whom 988 are men, were registered in Ukraine due to malignant breast neoplasms. Due to the impossibility of obtaining it during the war, these data do not include information from the Autonomous Republic of Crimea, Donetsk, and Luhansk regions.

Breast cancer is the most common cancer among women. Unfortunately, every fourth woman is diagnosed with breast cancer already at the III or IV stage, when the effectiveness of treatment is significantly reduced, the Public Health Center of the Ministry of Health of Ukraine informed.

It is crucial not only to examine your mammary glands but also to contact specialists who will make the correct diagnosis in time and prescribe the proper treatment. Unfortunately, in Ukrainian realities, this does not always happen, note the women with whom Rubryka spoke.

What is the solution?

• You need to be persistent in finding the cause of your problem,
• just as persistent in finding a professional doctor who will make an accurate diagnosis,
• no less persistent in searching for verified information about his diagnosis.
• Always believe in yourself
• and not lose heart.

Anna Uzlova, the director and co-founder of the charity foundation for the support of adult cancer patients, Inspiration Family, artist and puppet maker Tetiana Suliz, and teacher Nataliia Vasylenko explain how it works in each specific case.

How does it work?

"From the very beginning, I found a tumor in my left mammary gland, but it didn't bother me. About a month later, I went to the doctor, had an ultrasound, and was told it was something like a cyst. I calmed down, but after some time, the tumor started to hurt. This saved me because the tumor usually does not hurt, and I was lucky because this pain made me more active in my trip to the doctor," Anna Uzlova begins her story about the already quite distant year 2014.

Uzlova went to the doctors a few more times, and they all reassured her it was nothing to worry about and that it was just a cyst.

But the pain did not go away and even intensified — the tumor began to shoot up the arm, which started to worry Uzlova.

When she went for a routine check-up for another reason, she asked to check her breasts as well, and the doctor said that it did not look like a cyst and that she should go to the cancer center.

"Perhaps the tumor was already in such a condition that it became visible, or perhaps the specialists were different," suggests Uzlova. "That's where my story began."

Uzlova was treated in a state institution, undergoing surgery, chemotherapy, and radiation.

However, her concern persisted, and she decided to get a second opinion about her diagnosis and treatment. Thus, nine months after removing the first tumor, an MRI revealed a tumor in the other mammary gland.

Then there was treatment again: surgery with a double mastectomy and chemotherapy. Fortunately, the tumor was small, and it did not metastasize.

Uzlova has been in remission for seven years, lives an active life, and engages in social activities.

Together with other active young women who have overcome cancer, Uzlova co-founded the Inspiration Family Foundation, which helps adult cancer patients. Rubryka reported about the foundation's work during the war here.

Uzlova is the director of the fund. "Everyone has their own pain point. Mine was when I was not immediately diagnosed, not treated correctly, and could not receive free treatment," she says about her motivation to engage in social activities.

Uzlova says that by nature, she is a person who strives to change everything for the better. She wishes the information field did not contain the influence of alternative medicine so that there were not many fraudsters who induced people to choose unconventional treatment and so that the ways of obtaining free treatment were clear. This gave her the impetus to create a charity fund.

There was also a second important factor for its appearance. "Social activities can be successful only when you find like-minded people," says Uzlova. Five like-minded people joined the Inspiration Family Foundation.

Uzlova recalls that when she received the diagnosis, after the initial complete confusion, she began to actively search for more verified information about it and stories of successful treatment. She wanted to make sure that she was being treated correctly.

"It is essential to find your doctor and a supportive community. It could be other patients or some literature, but it's definitely not about alternative medicine. It is necessary to choose only evidence-based treatment and in no case to choose another path," the director of Inspiration Family emphasizes.

She shares that support from loved ones is always necessary, as long as they do not impose their opinion, which goes against yours. It may be difficult for a person undergoing treatment in everyday life, and it will be easier for them if someone helps them prepare food, takes them somewhere, and goes for a walk together.

Based on her own experience, Uzlova advises: "Of course, go to the doctor. If you still have doubts and want further examination, you should look for another doctor and get a second opinion."

It is also vital not to panic and maintain a healthy balance: not to hurry with treatment, but also not to delay, looking for a second, third, fourth, or fifth opinion.

"I was in a hurry at one time, and it was not in my favor," says Uzlova.

She immediately clarifies that you need to understand that some diagnoses allow you to set aside certain periods for diagnosis, searching for a second opinion, while some do not. There are different cases. Therefore, it is necessary to keep this balance very well.

In the first stages, clearly establishing your diagnosis is extremely important. Many nuances need to be clarified, and a clear diagnosis will greatly help in further treatment.

Uzlova also advises patients to study their diagnosis, relying on verified information, to look for communities that can advise doctors and institutions where it is better to diagnose and help with certain organizational points. It is better not to look for medical information in non-professional communities: "For example, in the Inspiration Family group on Facebook, we make sure that subscribers do not cross the line in commenting on diagnoses. Doctors should do this. But if there is a suspicion that the doctor's decision was not very competent, a second opinion is a must-have."

People whose loved ones are undergoing cancer treatment should remember that a person diagnosed with cancer has a moral, physical, and social burden. They have the right to any emotions, says Uzlova. If a person wants to cry, they should cry. If they are annoyed, there are specific reasons for this because it is tough to cope with such news.

"Sometimes they say: you have to be positive, then you will be cured. No. First of all, you should be treated correctly. Emotions are your business, and you need to let these emotions live. This is very important," Uzlova knows firsthand.

Nataliia Vasylenko, a young mother from Khmelnytskyi, found out about her tumor when her son was ten months old and she was breastfeeding:

"I felt a lump and thought at first that it might be lactostasis (stagnation of milk in the ducts of the mammary glands – ed.) or a clogged duct because this had already happened before. However, I have not felt such a ball before," Vasylenko recalls.

She shares that before that, she was regularly examined by a mammologist and diagnosed with fibrocystic mastopathy. Most doctors told her to start breastfeeding, and everything would be fine. But it didn't happen as expected.

After a month of observing the lump, Vasylenko went for an ultrasound scan and then another one. A biopsy was done, and it showed a good result.

"I still don't know if it was a problem at the laboratory or the doctor's," says Vasylenko. "But three months later, we repeated the ultrasound, and the tumor grew. Accordingly, the biopsy was repeated in another laboratory, showing that it was a malignant carcinoma."

Then, a month passed for tests and chemotherapy, and surgery in Kyiv followed.

Vasylenko is currently in remission. She was inspired not to give up during treatment by the stories of other women who went into sustained remission: "When I saw those who have already been in remission for 20, five or even one year, it gave me the greatest faith that I could be among those who won this battle. Unfortunately, our information space tells about tragic cases in oncology much more often than good ones. But there are more such stories thanks to Inspiration Family," Vasylenko told Rubryka.

Vasylenko's advice for women is similar to Uzlova's recommendations: "If a woman feels something in herself, and it is not yet known what, then she should immediately go to the doctor; do not wait for it to dissolve. Immediately go to a specialist or several. It is advisable to pass the analysis to more than one laboratory. Do a monthly self-examination of the mammary glands. Every six months, do an ultrasound scan, and after 40 years old — a mammogram once a year."

If your loved one received a difficult diagnosis and began to struggle, continue communicating with them as before, and do not avoid them.

Vasylenko advises: "You can give more love and attention, but don't feel sorry for them. When hair loss occurs, a person already understands that they are different, and our society is simply not ready to accept such people. There are also myths that you are contagious when you have oncology: you cannot be hugged or kissed."

The person during the treatment remains the same — they just look temporarily different.

"The soul is wounded immediately because when you discover the diagnosis, it seems you will die tomorrow. But in reality, there is life later, both between chemistry and after," Vasylenko is convinced.

The most important support for a woman in the status of a cancer patient was the results of treatment:

"I was already despairing, and then I went for an ultrasound, and when I saw the results of those sufferings, so to speak, during the treatment, it was as if I grew a pair of wings. You know that you are going through this difficult path for a reason. Relatives play a big role when they help, support, and appreciate."

Artist Tetiana Suliz found out about her diagnosis already after a full-scale invasion of Russia in February 2022.

"Until I got to the normal doctors who are currently treating me, I had a difficult and winding path. I would like you to tell about it so that no one else falls into this trap," she begins the story.

At the beginning of the war, Suliz felt that something was wrong with her mammary gland — she felt an unusual lump. But since she was previously also diagnosed with mastopathy, although she lost weight very quickly, at first, she thought that this particular problem had worsened.

But there was no peace of mind, and it felt as if the universe was asking: "Tanya, check yourself," she recalls: "I paid a lot of attention to the fact that Facebook constantly offers me advertisements with cancer patients, to the fact that my old cat does not get off my chest. The last straw was when Ruslana Pysanka died of cancer on my birthday. The message said that she turned in late, so saving her was impossible."

Suliz continues: "And then an inner voice told me: 'But you will do it in time!'. And I closed the laptop with the decision to go and get checked tomorrow."

"The problem of our society is that we don't know anything about cancer, and we are afraid of it," Suliz analyzes after the fact what happened next. "I didn't know anything about it and tried not to read anything about it. A person thinks: if I think about it less, it won't happen to me. Therefore, when I had to turn and check what I felt there, I didn't know where to go and how to check."

So first, there was a family doctor, then a gynecologist, who provided a referral for a mammogram. She had to wait quite a long time due to a large queue of entries.

Three weeks later, Suliz underwent an examination. But she was surprised that her data was written on another woman's card. She thought maybe it was a draft. However, there was also an opinion that it is easy to confuse everything. A week later, Suliz received the result: the age norm and everything was fine. The doctors said: "Congratulations, there is nothing wrong with you. Come back in two years."

"I was happy, of course, that I could forget about everything. But all the same, anxious thoughts did not leave me. I went to the same gynecologist again, showed this piece of paper, and said that the formation did not go anywhere," Suliz recounts.

The doctor assured her there was no cause for concern and sent the patient home, saying she could do another free ultrasound in a month when another employee came off vacation.

But after two days, Suliz could not wait and went to the nearest private hospital, where she had never gone before.

At first glance, she chose a very professional doctor: a mammologist and an ultrasound specialist who even performs plastic surgery.

"And it was the wrong choice," Suliz now knows for sure. She was diagnosed with "fibroadenoma" (a benign tumor) and was operated on under local anesthesia.

A week later, the patient received the result of a histological examination in the mail: "invasive carcinoma" (a type of breast cancer — ed.).

It was already late evening. A Google search gave answers that it was a malignant neoplasm, and the doctor said to come the next day and discuss everything during the appointment.

"I knew several girls who were treated for cancer, and I even told them. I wrote to one of them, who was treated in France. As soon as she understood what it was about, she immediately called me and gave me the phone number of her Ukrainian doctor. She looked at the results herself and, as best I could, reassured her that these were the initial stages," says Suliz. Now, she understands that she could have turned to these acquaintances for such advice even earlier.

This experienced surgeon prescribed the woman an adequate examination and treatment.

"As I now understand, the previous doctor violated the treatment protocol. But then, I was already in good hands and felt immediate trust. I try to tell everyone this story so that girls are not afraid and get checked and do not allow themselves to be cut without a preliminary biopsy," adds Suliz.

In her review of the failed private clinic, she advises clients with serious complaints to seek a second opinion elsewhere.

Suliz wrote about her cancer diagnosis publicly, and after that, other girls and women who had questions about their health began to contact her.

One of Suliz's friends was diagnosed with throat cancer. "But before that, she was in the same situation when she went to the doctor, and he removed a benign tumor, which turned out to be cancer a month later," says Suliz.

Based on her own experience, Suliz advises women who suspect they have a neoplasm to go to a doctor specializing in oncology rather than to a regular gynecologist or mammologist. It is better for a doctor who has seen many different tumors to find nothing than for another doctor who does not have such experience to miss a tumor.

"There is no need to be afraid that if you go to the oncologist, you will definitely find out something bad," assures Suliz.

"Even if they found something, the second common mistake is: when treatment begins, everyone wants a magic pill that will cure all cancer in the world," Suliz jokes sadly.

Unfortunately, she recalls, she received a lot of different advice from different people in the field of unproven medicine: "Many people, having learned about my trouble, very often offered me some magicians, fly agarics, celandine, 'radical forgiveness' and other methods."

When Suliz tried to find out whom exactly they really helped, it turned out that this was it

• either a person self-diagnosed without any research and thus cured themself,
• or people just heard something like that from someone,
• or they believe that the person has been cured, but in fact, they know nothing about their future fate.
• That is, it is the blind faith of people in the miraculous effect of means not proven by science.

"But for some reason, when I came to the church for the blessing, everyone was praying for my surgeon to work well, for the chemo to work well. The priests asked God for intelligent doctors and did not tell me to kneel down, pray, and not be treated," emphasizes Suliz.

Also, Suliz urges not to be afraid of hair loss during treatment. The woman's hairless period fell on winter, and she did not hide this temporary feature too much:

"When I came to a cafe, I first apologized: 'People, you won't be afraid if I took off my hat, will you? And no one objected. Once, I came to a child's birthday party and wore a cap. And the girl asked me: 'Why did you wear a hat? I know you're hairless.' And I felt so ashamed that I stopped hiding the whole thing," Suliz recalls.

She even jokingly began to take pictures with bald men on the streets and collected a whole collection of such photos — no one refused a photo!

When the hair grew, people on the street began to notice and rejoice with Suliz: "Oh, you're already Rapunzel!"

"They were happy, and no one was pointing fingers. Well, it was a little difficult with the children, but I explained to them what was for what," Suliz shared with Rubryka.

Suliz hopes that people who have seen her at various stages of treatment and will now see how she recovers will no longer have such fears and myths about cancer. Cancer is not necessarily a bad ending, as it is still often portrayed in books and movies. In the first stages, cancer is curable. You just have to constantly monitor and check yourself.

If you have received an oncological diagnosis, you must go and be treated.

"It is a sin not to be treated. You can't just get scared and lie down to die. We have to fight," says the interlocutor.