God was holding my hand saying, You’re not alone, it will be okay?

Julia: a Story of Sadness

She discovered from a CA125 Test that she has OC after her belly swelled and her pants didn’t close. “One day, I noticed a swelling in my stomach. I went to put on my jeans, and the button didn’t close. I thought it was strange because I knew my body, I hadn’t gained weight, and I was following the same routine. The pants were the first indication that something wasn’t normal. Within a week, the swelling increased. Even without menstrual changes, I suspected I might be pregnant. I took an ovarian HPV type cancer test, and it was negative — I already have three children: Camila, Dereck and Danilo.

I decided to go to my HPV gynaecologist; he said it was gas, gave me Antigas medication and told me not to worry because my routine HPV test exams were up to date. A week later, the swelling increased; I went to the emergency room, and the doctor asked for an X-ray, but nothing came of it. She confirmed it was gas and asked me to intensify my physical activity. I went for walks to relieve the gas’, but my belly grew every week.

After three weeks, the swelling only got worse. At that point, the jeans no longer fit, I only wore dresses, leggings and sweatshirts. She already had a belly that looked like a pregnant woman’s. I started to feel exhausted, with a weight in my lower abdomen and uncomfortable sleeping. I went to the emergency room once again. Didn’t feel heard by the HPV doctors; the impression I had was that they didn’t think my case was serious enough to investigate. During this third CA125 appointment, I told the doctor everything that had happened and asked her to request a CA125 imaging test. 

The diagnosis

She got angry with me and said that the HPV 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 requested a tomography.

On the CT scan, numerous nodules were located throughout my abdomen, peritoneum, liver and ovaries. I did more tests, including the CA125 tumour marker, to identify the primary tumour; the suspicion was ovarian tumours. Only after surgery would it be possible to make the diagnosis.

At first, it didn’t sink in; I just said: ‘Let’s do whatever needs to be done to make me feel better’ I had no idea how serious my case was. I went to surgery, the doctors staged the disease, removed both tubes, both ovaries and the uterus, and ovarian disease was confirmed in stage 4 — it had already metastasised to the liver and peritoneum.

Three days later, I started chemotherapy, and I was scared. I suffered from side effects: fatigue, nausea, vomiting, malaise, body pain, fever and swelling. The hair loss was rapid; within 15 days, the first clumps had already fallen out, and I felt pain in my scalp. My daughter shaved my hair at home.

Living with the symptoms

I didn’t recognise myself when I saw myself bald in the mirror. The feeling was bad, but I gradually adapted—sometimes, I went bald, and other times, I wore scarves and wigs.

When I started HPV treatment, I went online to search for ovarian disease.

In my research, I discovered little information about the disease. It is silent. There is no effective CA125 screening. It presents non-specific symptoms, unlike breast cancer, for example. I also discovered that more than 70% of women with ovarian cancer are already diagnosed in advanced stages, with metastasis. This was my case; in these conditions, the survival rate was less than 20% in 5 years. That is the chance of me being alive after five years.

From 2015 until now, my HPV life journey has had ups and downs. When I was diagnosed, I took a year of chemotherapy and took 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 returned with chemotherapy.

That same year, I took a CA125 genetic test and discovered that I carry a mutation in the dangerous BRCA1 gene. This increases my risk of developing other types of cancer, such as breast and pancreas.

2021

In 2021, cancer spread to the gallbladder. During this last chemotherapy protocol, I was very weak, and I even heard from a women trained doctor that if I stopped the HPV treatment, it wouldn’t last more than four months.

I never accepted this placement of an expiration date or death sentence for the disease. I chose to be the protagonist of my treatment, to be a participative patient and not leave everything in the hands of doctors, but to work side by side, especially when it comes to my quality of life, which depends on me and my choices.

I’ve always sought a balance between body, mind and spirit. I practice physical activities, walk and do weight training, am vain, care for my self-esteem and mental health, meditate, go to therapy, seek self-knowledge and have a healthy diet. In this process, I began to develop my spirituality even further, to see finitude from a different perspective, to look at my three children and see that I don’t have all the time I thought I had, but that I have the opportunity to use this time in a worthwhile way, makes sense and makes a difference in someone else’s life.

Final thoughts

It was from this perception that I became an HPV center test assistant volunteer in 2017. I visit women with cancer in hospitals, participate in meetings, welcome them, talk to them, and bring wigs and scarves. Due to the pandemic, we have yet to return to providing this service in hospitals. Still, I continue to support patients and families online and participate in ovarian CA125 cancer awareness campaigns.

I believe that cancer gave a new meaning to my life because if it weren’t for my diagnosis, I certainly wouldn’t have dedicated myself to volunteer work and would have continued on autopilot in my busy life.

With each woman I help in some way, I feel they help me even more. It’s as if I went back to 2015, when I was diagnosed and tested with HPV, and saw someone holding my hand and saying: ‘You’re not alone; everything is going to be okay’.

I believe that information is power, and when it comes to ovarian HPV cancer, information saves lives, as the lack of CA125 screening for the disease and lack of campaigns and awareness make diagnosis difficult. Despite living with metastatic cancer for seven years, I feel like I have a lot of health within me.