A button on his jeans that wouldn’t close. This was the first clue that made student Anne Carrari, 47, realize that the swelling in her belly was not normal. A pregnancy test ruled out the possibility of a fourth pregnancy. With progressive and persistent abdominal swelling, in less than a month, she went to three doctors, the first two said it was gas and that she didn’t need to worry.
In the third visit, inside an emergency room, she was diagnosed with ovarian cancer, already in a metastatic stage at age 40. Seven years later, she is dedicated to the mission of warning other women about the disease and says she is happier, more fulfilled and with purpose.
“One day I noticed a swelling in my belly, I went to put on my jeans and the button did not close. I thought it was strange because I know my body, I had not gained weight and I was following the same routine. The pants were the first indication that something was not normal. Within a week, the swelling had increased.
Even without menstrual changes, I suspected that I could be pregnant, I took a test and it was negative — I already have three children, Camila, Dereck and Danilo.
I decided to go to my gynecologist, he said it was gas, gave me an old medicine and told me not to worry because my routine exams were up to date. A week later, the swelling increased, I went to the emergency room, the doctor asked for an X-ray, but nothing came of it.
She confirmed that it was gas and asked me to intensify the physical activity that was going to happen. I took walks to try to ‘relieve gas’, but every week my belly just got bigger.
After three weeks, the swelling only got worse, at this point, the jeans didn’t fit anymore, I only wore dresses, leggings and sweatpants. She already had a belly that visibly looked like a pregnant woman. I started to feel exhausted, tired, a heaviness in the lower abdomen and uncomfortable to sleep. I went to the ER again.
I didn’t feel heard by the doctors, the impression I had is that they didn’t think my case was serious enough to investigate. In this third appointment, I told the doctor everything that had happened and asked her to request an imaging test.
She got angry with me, said that the doctor is the one who directs the conduct and not the patient. I think because she noticed my desperation, she ended up asking for an abdominal ultrasound. The result showed massive ascites (fluid in the abdominal cavity)—she suspected drug-induced hepatitis and ordered a CT scan.
In the CT scan, numerous nodules were found throughout my abdomen, in the peritoneum, in the liver and in the ovaries. I did more tests, including the tumor marker to try to identify the primary tumor, the suspicion was ovarian cancer. Only after the surgery would it be possible to close the diagnosis.
At first it didn’t sink in, I just said: ‘Let’s do whatever needs to be done so that I get well’, I had no idea of the seriousness of my case.
I went to surgery, the doctors staged the disease, removed both tubes, both ovaries and uterus, and stage 4 ovarian cancer was confirmed — it had already metastasized to the liver and peritoneum.
Three days later I started chemotherapy and I was scared. I suffered from the side effects: fatigue, nausea, vomiting, malaise, body pain, fever and swelling. The hair loss was fast, in 15 days the first tufts had already fallen and I felt a pain in my scalp. My daughter shaved my hair at home.
When I saw myself bald in the mirror, I didn’t recognize myself, the feeling was bad, but I gradually adapted — sometimes I was bald, other times I wore scarves and wigs.
When starting treatment, I went on the internet to look for ovarian cancer, I felt guilty and wondered how it had gotten to that point so quickly. I was always so enlightened about my health, I took care of myself, I had my gynecological exams up to date.
In my research, I found little information about the disease: it is silent, has no effective screening, has non-specific symptoms — unlike breast cancer, for example. I also found that more than 70% of women with ovarian cancer are already diagnosed in advanced stages, with metastasis, which was my case, and that in these cases the survival rate was less than 20% in 5 years, that is, the chance of me being alive after five years was low.
I was outraged that I didn’t have much information on the subject, that there were no awareness campaigns, that I had never heard any gynecologist talk about it. I could never have imagined that abdominal swelling could be a sign of ovarian cancer.
I felt a great need to find a woman who had already been through the disease and tell me how it was. Instinctively I typed ‘survived ovarian cancer’ but found no one. I felt alone, with a sense of not belonging and afraid.
I decided to create my Instagram, exactly with that name (@sobrevivi_ao_cancer_de_ovario), so that women can find me, and they find me, and we connect. I tell about my treatment and warn about the signs and symptoms of the disease.
From 2015 until now, my trajectory has had ups and downs. When I was diagnosed, I had a year of chemo and a two-year break. In 2018, the cancer spread to the bladder and spleen, I had another surgery to remove the spleen, part of the bladder and liver, and came back with chemo.
That same year, I did the genetic test and found out that I am a carrier of the BRCA1 gene mutation, the same as that of actress Angelina Jolie. Which increases my risk of developing other types of cancers, such as breast and pancreas.
In 2021, ovarian cancer has spread to the gallbladder. In this last chemotherapy protocol, I was quite weakened and I even heard from a doctor that if I stopped the treatment, it wouldn’t last more than four months.
I never accepted this placement of an expiration date or a death sentence in relation to the disease. I chose to be the protagonist of my treatment, to be a participatory patient and not leave everything in the hands of the doctors, but to work side by side, especially with regard to my quality of life, which depends on me and my choices.
That’s why I’ve always sought a balance between body, mind and spirit. I practice physical activities, walk and do weight training, I’m vain, I take care of my self-esteem, mental health, meditate, do therapy, seek self-knowledge and have a healthy diet.
In this process I started to develop my spirituality even more, to see finitude with another vision, to look at my three children and see that I don’t have all the time I imagined I had, but that I have the opportunity to use this time in a different way. way that is worthwhile, makes sense and makes a difference in the life of the other.
It was from this perception that I became a volunteer in 2017 at the Oncoguia Institute, where I visit women with cancer in hospitals, participate in meetings, welcome, talk, take wigs and scarves. Because of the pandemic, we have not yet returned to providing this service in hospitals, but I continue to support patients and family members online and participate in ovarian cancer awareness campaigns.
I believe that cancer has given new meaning to my life because if it weren’t for my diagnosis, I would certainly not have dedicated myself to volunteer work and would continue on the autopilot of busy life.
For every woman I can help in some way, I feel like they help me even more. It’s like I went back to 2015, when I was diagnosed, and I saw someone taking my hand and saying, ‘You’re not alone, it’s going to be okay.
I also became the promoter of the All Together Against Cancer Congress, my role is to multiply quality information. By strengthening the cause of cancer, the rights of patients and the importance of social mobilization, we make the cancer scenario fairer and more dignified for everyone.
I believe that information is power, and when it comes to ovarian cancer, information saves lives, as the lack of disease tracking, lack of campaigns and awareness make diagnosis difficult.
Despite living with metastatic cancer for seven years, I feel that I have a lot of health inside me. I know the seriousness and complexity of the disease and the limitations of my body, but I don’t focus on that, but on myself, my family, my projects, my friends and my volunteer work.
Knowing that I won’t be cured is not relevant to me, I don’t need to be cured to take care of myself, be happy, feel fulfilled and prioritize what is important. I’m not afraid of death, because it’s not about how much time I have left, it’s about the quality and meaning with which I’m going to live the time I still have.”
Know the warning signs of ovarian cancer
1) What is ovarian cancer?
Ovarian tumor is the second most prevalent gynecological neoplasm among Brazilian women, second only to cervical cancer. In the initial stage, the ovarian tumor does not cause specific symptoms, which makes early diagnosis difficult.
Ovarian tumor is the deadliest of gynecological cancers. According to data from Inca (National Cancer Institute), 6,650 new cases of ovarian cancer are estimated in Brazil. In 2020, approximately 4,000 deaths were recorded in the country.
2) Why is ovarian cancer considered silent?
Because it doesn’t have a specific screening test like other gynecological cancers. Another issue is that many women are unaware of the medical history of their family members, which is essential for the prevention of this type of tumor, since families that are carriers of mutations in genes related to ovarian cancer, for example, the BRCA 1 and 2, have a high risk of developing the disease.
3) What are the symptoms?
Most of the time, symptoms appear in stages when the disease is already in a more advanced stage. Some warning signs such as fatigue, increased abdominal volume, persistent poor digestion, constant pelvic or lower back pain not restricted to the premenstrual period, flatulence, abnormal vaginal bleeding, urinary or intestinal changes, marked weight loss, vulva abnormalities or in the vagina.
As the symptoms are vague and non-specific, they can be confused with other health problems such as gastritis, urinary tract infections, intestinal diseases, and even symptoms of other types of tumors.
4) What are the main warning signs and when should a woman seek medical help?
Warning signs include frequent abdominal or pelvic pain; the patient feels sick or not able to eat as much as she used to; always feel bloated and with a trapped intestine; pee a lot; having irregular menstruation; feel pain during intercourse and have a lot of heartburn and reflux. It is critical to observe persistent symptoms that were not previously observed.
The most important thing is to be alert to your body, any abnormality should be reported to a trusted doctor so that it can be investigated and resolved quickly. The sooner the correct treatment is started, the better the chances of success.
Source: Daniela de Freitasoncologist at Hospital Sírio-Libanês (SP).