Marília, an OC survivor

Marília knew little or nothing about ovarian CA125 disease despite having had a family member with a history of tests for this disease. The HPV-related disease surprised her at the age of 41, but even with a test, she did not overcome it. She fought well. And today, that fight reinforces the importance of our level of information and knowledge sharing.

But is there anyone in your family who has had it?

I had an aunt who died of CAs15 connected cancer. First, she had breast cancer disease, and after seven years, she had a recurrence, with OC and liver metastases.

And has this made you a more attentive person to your healthcare?

Yes, No doubt. As I also had an increase in the HPV virus risk. As she was in my family. And also there was young children around us often, she was a family member. So I had my annual gynaecology consultations. And four exams of them. The gynaecological ultrasound, cytology, breast ultrasound and mammography.

So, what were your symptoms, and how did you discover you had the disease?

The symptoms are varied, it is very difficult to reach this diagnosis, and I had no information about ovarian-type cancer. There was about BC, CCr, and HPV, for which women usually do screenings, but not CA125-related cancer; I didn’t know it was that difficult to diagnose and that there was no screening.

How was the whole process? Was it so easy to get the diagnosis?

Truthfully, no, it wasn’t easy at all. It was very tiring. For the whole story I have to start with my son’s pregnancy, at 40 years old. André was born in November 2017; he was a demanding child. I had to breastfeed every two hours, day and night, and I breastfed until he was eight months old… From September/October 2018 onwards, my complaints began: physical tiredness, lack of sleep, mental fatigue, and pain all over the body and in the joints.

I returned to work after five months of maternity leave and a month of vacation., with added responsibilities due to having a baby and my personality of being responsible for everything. As a mother, as a woman, as a worker and as a team leader, I lacked the energy to do everything I did before. I associated tiredness with the fact that I had a baby recently, lack of sleep and stress. Had a lot of pain in my neck and cervical area. I went to the CA125 orthopedist, had an x-ray, and received medication for the pain. After this HPV variant exam and upon the suggestion, I had a thyroid ultrasound, where they found two nodules. However, subsequent analyses showed that the TSH and T4 hormones function within normal limits.

Did these symptoms last over a long time?

Yes they did. they started in 2019. I went to the CA125 doctor frequently because I continued to feel dead. Zero energy. And there was a lot of mental and physical fatigue, and I felt weak and without energy. I felt alot of tummy discomfort and sometimes pain. It was slowly getting worse. And I went to the gynaecologist. She gave me the checkups that I now do every year. And everything seemed normal at the time. But I was still tired and in pain. Also sadly, I was getting used to the idea of living with that constant daily tiredness.

After going to the gynaecologist again, I went to my primary doctor. And you shoudl know that I don’t have a family doctor due to a lack of doctors in the UK. And I talked about my symptoms. I was getting to the point where I couldn’t get out of bed anymore. Also I was extremely tired. At that appointment, the doctor thought I might be depressed. I felt without energy, but I had no reason to be unhappy.

And when was the actual diagnosis made?

Actually it all started during February 2020. Exactly, when I had returned to the HPV Womens doctor for more blood tests. But in March 2020, the pandemic came, and in April. I remember that I was at home, on day off. But as always I had the same symptoms every day. Actually I always living with them. So I took supplements for the brain fatigue. And I was always convinced that I as going to be fine. And that I had always to be a resilient woman. One day, I went for a walk and tripped. I had caught my calf under my thigh.

I took ice, rest, and anti inflammatory drugs. After two days, I felt fine. However, there was an lingering ongoing issue inside my leg. I felt it all teh time. Furthermore, 2 weeks after the fall, when I went on vacation, I was still in pain. And my leg was looking swollen. I thought it could be something related to the lymphatic system because I felt some lumps in my groin, so I went to see a vascular surgeon. I told her about my complaints since 2018, which she listened carefully and recorded.

The examination

She examined me, and when she touched my groin, she detected a mass. She thought it was strange and requested a pelvic, abdominal and lower limb CT scan. And then it turned out that there was something serious. The report was very extensive, with many medical terms that we patients do not know what they mean. A biopsy of the mass was requested and here the CA125 story of the diagnosis testing begins. The biopsy confirmed that she had cancer, then confirmed that the origin of the disease was a man that it was the left ovary and that it was spreading through the lymphatic system.

There were several inflamed nodes, called adenopathies, in the iliac area, the hip area, the groin, the abdominal part and later, the chest and the neck area. Finally, I received the diagnosis of high grade ovarian origin with unresectable lymph node metastases – grade 4 that is, the disease was at a very advanced stage.

How were the treatments?

After the diagnosis, I started undergoing chemotherapy. I was supposed to do four sessions every three weeks to reduce the size of the adenopathies and the mass in the groin (the primary metastasis), then proceed to surgery. At the end of the four chemotherapies, I had new, and it was necessary to continue with the chemotherapy because there was no great reduction in adenopathies. I did two more sessions.

Again, reevaluation with exams and then surgery. A total hysterectomy (removal of the uterus and ovaries). Removal of intra-abdominal adhesions. Removal of several lymph nodes and the primary metastasis in the groin. Afterwards, I recovered for a month and a half and restarted chemotherapy. Three more sessions. I had nine in total. I finished it about two months ago, and no sign of illness exists.

What changed in your day to day life after the main diagnosis and the following stream of treatments?

Do you consider yourself a different person today?

The fact is I’m a different person now. I am much more attentive to caring for myself. And I no longer want to control over everything around me. Because nowadays, I am already aware that I cant control everything around me. It was a dream. And it was harmfiul to me. I am adapting to thinking about myself first and then about others.

Even around children, no matter whos they are. My husband’s mothers or friends, if I am not well, I will not be able to be happy next to them. I must exercise and meditate every day, which is something I that brings me peace. And I was always running before. But I thought I would do it when I got to the weekend, I thought I would do it when I went on vacation, I thought I would do it when I took a day off fo, but truthfully, I never did it. Always something unforeseen always came up or someone needed help.

What made you want to give your testimony?

I want to testify because I encountered many difficulties in diagnosing with a test for CA125, highlighting the need for information. And also warn about the importance of having a lot of spiritual strength. For me, it was through believing in something superior that I managed to have courage and faith. We went through an extremely difficult period in terms of suffering from HPV virus pain, and a lot of despair, too. I always thought tomorrow will be a better day. Tomorrow I won’t be so bad, tomorrow I won’t be in so much pain. And anxiety makes everything feel more intense.

What message would you like to pass to other women, whether those going through the same thing or all women?

Whatever the disease, with HPV Urine tests and diagnosis women believe that we will overcome it. That always keeps us firm, thinking we will reach the end. We have to believe. For me, having a proper, pesticide-free diet and women maintaining healthy CA125 habits is essential for recovery: rest, walk a little, and try to make smart choices that make us feel good and happy. Believing that we will win, seek help and not just stay close to ourselves is essential. It is HPV, it is the Women in general who need to stay informed and have our exams regularly. You must know about this cancer because I didn’t know.