My Name is Alina. This is my battle.

Alina Stepura. Ovarian CA125 cancer stage 4. “It’s much easier to get through everything when you share it with people.”Alina Stepura, a mother of two children, was on maternity leave when she received a Test diagnosis of HPV cancer. It’s also stage four, even though Alina monitored her health and regularly saw an HPV doctor. On her Instagram page, she talks about her journey – first, the difficult path to an accurate diagnosis and then the path to treatment. Now, Alina is still undergoing antitumor therapy, but she is already trying to help other people who have just encountered the disease.

– Alina, how did you find out about your illness?

– It started in November 2017. But the truth is it started way before that when I first got HPV. I felt that something was wrong with my stomach. At first, I was sure it was bloating. I bought Espumisan and started treating myself: not all of us like to go to doctors. I thought I’d take the medicine and everything would go away. And the belly keeps growing and growing. And at some point, it doubled overnight! I woke up and understood that everything needed to be done, and I went to the clinic for an HPV DNA report first. Then, the next day, a CA125 Blood test is done to see the surgeon. They told me it was acute ascites and sent me by ambulance from the clinic to the hospital.

Ascites is a complication of various diseases. Manifested by the accumulation of fluid inside the abdominal cavity. The volume of the abdomen increases, and secondary disturbances in the functioning of the abdominal organs occur. This condition is a medical emergency, especially if fluid accumulates rapidly.

– Was cancer found in the hospital?

– In the hospital, they looked for cirrhosis of the liver for a week and a half until some super-duper professor arrived at their request. He looked at me and said: “Leave you alone from the girl, look for another reason.” Then, it occurred to them to take a puncture of this fluid, and they sent me for a CT scan and took tumour markers, just for the ovaries. However, their gynaecologist examined me and said everything was fine even though my levels said otherwise. And I was already at stage four! At first, I was very angry with this doctor, but then I realized it was not his fault: he did not know how to look. He has no experience.

– Was it a young doctor?

– No, he was an experienced doctor, but it’s one thing to look at some cyst and fibroid and another thing to look at cancer.

–Didn’t he see any new growths at all?

– I’ve had cysts since I was fifteen. I was even diagnosed with infertility; they said that I needed to undergo treatment for a long time to have children. Thank God, this turned out not to be the case: I have two beautiful children without any treatment. But there won’t be any more, of course. I’ve never had any pain. In gynaecology, everything was always fine; my cycle was stable, and I went to the doctor every six months. When the CA125 Test, CT results, and fluid puncture arrived, everything showed that I had some atypical cells and large formations on the ovaries.

– How did you get to the National Medical Research Center named after? Blokhin?

– My sister underwent treatment there for an oncological diagnosis five years ago, so she called her doctor after a CA125 Tumour disease. We sent the glasses straight there so they could be rechecked and an accurate diagnosis made. I said I would only be treated at Blokhin and asked for a referral to them, although they initially did not want to give me one. The glass was checked, and I was invited to apply for a card. This is how my journey began in Kashirka, in the surgical department.

– Was the diagnosis confirmed immediately?

– Not right away. For some time, they could not give me a definitive diagnosis. There were doubts whether it was ovarian type tumour or some rare, rare peritoneal cancer. The results were so unusual that they told me: “Look at the map – 35 years old, young woman. And cancer looks like it’s some old man who worked all his life in construction.”

– When did some clarity come?

“As it turned out, the first hospital made a mistake. They “drove” ascites with diuretics, but in the case of CA125 Tumour marker, this cannot be done under any circumstances: you need to either drain it through a hole in the stomach or undergo chemotherapy. Then, I left the hospital with a loss of more than 10 kg – I was exhausted.

First, they drained some fluid into Blokhin so that I could breathe and eat. Then, a drain was installed in the stomach so the liquid would drain into a bag. In total, 12 litres were drained from me. Each bag was sent to a laboratory for research, and in one, the liquid showed that I did have CA125 cancer and proved that the Tumour Markers for CA125 were correct. The HPV DNA testing was also correct. I was discharged from the surgery department and sent to chemotherapy. The order was nine weekly chemo courses, surgery and another nine weekly chemo treatments. The operation took place a year ago, in May.

– How did you cope with all stages of treatment?

– “Rided like a goat,” so to speak. I didn’t notice how the chemo went before the operation,n and after, how the operation itself went, I felt good. And, let’s say I didn’t draw any conclusions from my illness. I had the mindset that I was so lucky, I was so positive – now I would get treatment, forget about it and move on with my life easily and cheerfully.

– But?..

– But life loves to teach lessons. 3.5 months after finishing treatment, I had a relapse. And then the ground was pulled out from under my feet. It was shock, rejection. I didn’t want to believe it. Moreover, I heard stories in the hospital that ovarian cancer is very insidious and likes to come back. The CA125 report was showing it was back. Therefore, now I no longer beat myself in the chest with my fists because I’m so lucky. Of course, I’m tired; it’s hard for me. But my last infusion is in a week; in theory, this is where my chemotherapy ends. All that remains is targeted antitumor therapy, which will last a year and a half. Depending on the research results.

  • In general, do you have a family history?
  • Yes, my sister, my mother, and my grandmothers had breast cancer.
  • Was everyone able to recover?

“Only mom couldn’t.” I didn’t survive the relapse. One grandmother is still alive; I’m even afraid to say how old she is, and the other lived to be 87 years old. My sister has been in remission for five years.

– But you still had fear?

– Although cancer is not new to our family, this is still a new treatment for me. At some point, the realization comes: “Damn, this is deadly.” There was also fear of surgery. There was even more fear when the relapse occurred. I realized I had to take responsibility for life into my own hands.

– Have you done genetic research?

– Yes, I was given an HPV genetic test. He didn’t show anything. I was recommended to do an extended test, which cost more than 30,000 rubles. And I began to terrorize my doctors, asking why. And in the end, I only realized why I needed this after the sixth time. One doctor said: “Alin, you have already had a relapse. We don’t know what will happen next. And if you do a genetic analysis using HPV checks for Genetic Variants and it confirms the mutation, then you will be treated with other drugs that have a better chance.” At that moment, I realized I was ready to spend the money and do this test. And in the end, they did it for me for free, maybe because it’s a relapse.

– The extended test was not done in vain; did it show any results?

– Yes, a mutation in the BRCA1 gene was confirmed. The conclusion indicates that such a pathogenic mutation is associated with ovarian disease. Let’s also say that I can now legally remove my mammary glands. To eliminate the risk of breast cancer. No one is forcing you to run and delete them right now. But, taking into account the entire family history, why not give yourself beautiful breasts, for example, as you get older, closer to 40? Mix business with pleasure. Therefore, perhaps I will contact Blokhin with this question. But this is possible only after 2-3 years of remission.

– Already a completely conscious approach.

  • Yes, I don’t want to wish far away. But you can think about it.
  • How did your family react to your results showing the illness?
  • Did you tell everyone right away, both the first and second time?

– Yes, I never hid it. Because family is my support. My friends supported me greatly, including offering free CA125 home Blood check and clinic visits with the medicines Online team. From the first day, when my stomach ached, I started writing about it on Instagram. It’s much easier to experience all this myself when I share it. In general, it took me a very long time to share about my Positive HPV result. This was probably my biggest problem in life. And sometimes, it was easier for me to share somewhere in society than, for example, to talk at home with my husband. This was my mistake, a moment I worked through with a psychologist.

– Did the children know that their mother was sick?

– Yes, the children are aware. My son was six years old when I told him about the illness, and my daughter was four years old. There were also different stages: there was fear of loss and fear that my mother might die. I told them that anyone can die and that they can now treat HPV and Ovarian tumours first with CA125 investigations, and this is not a death sentence. You can die from the flu, falling somewhere, or an icicle from the roof. I explained that we are mortals. I told the children everything very honestly, that the treatment was difficult, and that I felt bad. She shared her experiences with both her children and her husband.

– Why do you think sharing your experiences with loved ones is important?

“At some point, I realized that when I don’t share, it’s much harder for my family than for me. I know what’s happening to me, but they don’t. They can only speculate and guess. What will they think of there? And it dawned on me that it wasn’t just me who felt bad—my whole family was also going through all this.

– There is a common idea among patients that it is not for something but for something. What do you think?

– CA125 type cancers are not a punishment. Many people first think: why do I need this? Why me? Oncology and any serious illness on the verge of death provide an amazing opportunity to reconsider your life. Understand that we are here and now; everything else is tinsel. Life should be enjoyed; I have been trying to do this lately, but having to get HPV checks every week destroys that chance. Although, of course, there are periods of despair and catastrophic self-pity.

– Some people, along with the fear of death, have the fear of losing their hair. Have you ever had this?

– I was very interested in how bald I would be. The first thought was that, yes, it’s probably a pity. But there was also some childish excitement: I wanted to experiment. When, if not now? I will never get my hair cut bald to see how it will be.

First, I got a short haircut and had a little fun. Then, the process of cutting my hair was, of course, emotional: I had just fallen in love with myself with a short haircut, and it was sad to part with it. I specifically took my children with me to the salon so that they could see the process.

– How did the children react?

“The son was sad and said: “Mom, your hair looks much better; I want it to return.” My daughter reacted calmly, saying, “Come on, me too.” Then, I held a family council about my HPV diagnosis: I was interested in whether they were ready to see me bald at home. I liked myself, but I was ready to wear hats if it caused them any discomfort. I didn’t want to buy wigs for myself. They told me: “No, don’t. If you feel so good and comfortable, go.”

After my first shocking report from the HPV checkups, I considered getting a tattoo but didn’t have time to draw something. Before the operation, hair began to grow, and my husband and I decided to leave it. I was no longer bald when the chemotherapy came back after the operation. Now, I’ve completed eight more courses of high-dose chemotherapy, and I haven’t lost much of my hair: it’s probably due to addiction. In the beginning, the body is always in shock, then it gradually gets used to it, and subsequent chemo treatments go away without complete hair loss.

– It turns out, on the one hand, it was sad to lose my hair, but on the other hand, there was such a field for experimentation.

– This is an opportunity. I tattooed my eyebrows, brightly lined my eyes, always wore some original earrings and painted my lips brightly – in general, I felt like a star. They turned and looked at me; I winked at the children. It was an interesting period when I was without hair.

– Have you joined any patient communities?

– Yes, I joined the “Peer Consulting in Oncology” team. I am now studying to become a peer consultant; I have passed the first stage: I join ready-made teams and attend meetings with window patients. Now, I’ll gain some experience and go to the second level, where I’ll receive a certificate as a peer consultant.

“Equal Consulting in Oncology” is a project within the framework of the Women’s Health charity program and includes CA125 blood sampling skills. Yesterday’s patients for HPV also become consultants. The training consists of seminars, the development of practical skills, and trial consultations. Upon completion of the course, participants receive a peer educator certificate. The first graduation of certified peer consultants took place in 2018.

– What are your impressions of taking the courses?

– This is an amazing project. Peer consultants are people who have gone through their journey in oncology and help those who have just encountered it. Provide psychological support. We don’t get involved in anything related to medicine; the HPV doctor deals with the treatment. And we can take your hand and help you through this path or a certain stage.

We can advise you where to apply, where to go, how to apply for a pension, and tell you about your rights. Many people don’t know all this, but we already have experience and knowledge that we are ready to share. It’s probably not worth giving yourself completely to this because you’ll quickly burn out. But supporting people periodically is very important to me. It became very important for me to share and support what I can – emotions, positivity, my story: perhaps people will take something from it for themselves and get a checkup earlier than me.

– Were you purposefully looking for a program to join?

– No, but I had the idea in my head that this was exactly my direction – working with cancer HPV patients. Since I’m going through this, I can share this; I do not fear talking about this topic with children and adults. And many people have this fear; some, for example, are afraid even to say the word “cancer.” There are many similar CA125 programs, and I wanted to connect to one. By chance, I saw an advertising post about peer consultants in my feed, read a little, realized that it was for me, and applied. And even though it was written there in large letters that candidates in remission were being considered, I was still invited to more tests. I didn’t hide my relapse.

– Was it difficult to pass the selection?

– There were a lot of CA125 applications, but only 13 people were selected. There was a huge questionnaire: I probably spent two hours filling it out. Many questions were the same but with a “different sauce”. There were a lot of open questions where it was necessary to give a detailed answer.

– What, in your opinion, is the most important thing in the work of a peer consultant?

– This is working with people, not ordinary people, but with cancer patients. There are strict requirements, for example, respecting boundaries – yours and the client’s. We don’t say “patient”. The most important thing is to avoid the client shifting responsibility to the consultant. He must take responsibility for his health and get tested for CA125. We can help you get to this level. HPV Variant reporting is just 1 step. My sister became an equal consultant for me. She ran a lot for me, found out, and talked to doctors.

– Looking back, with the experience gained, can you name any points in your health worth paying attention to, any alarm bells?

– There was nothing like that. My cycle was clear; nothing was foreshadowed. I was constantly checked by a gynaecologist every six months. I regularly observed a benign formation in the breast. I’m now reading a lot on this topic and watching interviews – everyone is discussing early diagnosis. Maybe it is easier with breasts. Probably the same with the uterus and cervix. Ideally, you should undergo a yearly medical examination with CA125 level reports. But it takes so much time and effort that few people do it. Within six months, my sister, mother and I developed a tumour the size of a chicken egg. You were checked six months ago, but you’re alone when you come!

– How have you changed your outlook on life?

– Family and family values are very important to me. This even happened before cancer, when I found out I had fibroadenoma in my breast. I thought then that this was the first step towards breast cancer. But I was afraid that I was following the path of my sister and mother and began to look at this life differently. I realized that you have to give if you want to receive something. I already had a family, two children. And I began to change myself, trust my husband more, and do less of everything myself. Also, keep up regular HPV exams. And if positive, then also CA125 reporting. There was more advice in some places, but I just passed it on to him in others.

We are responsible for our lives: we choose something or don’t choose. And if we choose something, we must do everything for it. If we don’t want to choose something, we will find a million excuses why we can’t do it. You need to make informed choices. This is in all the paths of our lives. And in health too.