Olivias story

I am 33 years old; two and a half years ago, I had just turned 31 during a general check-up. At the CA125 Test at my gynaecologist, to whom I went for the HPV pap test, without me having the slightest symptom, I was diagnosed with ovarian-type cancer.

I remember the gynaecologists who looked at me with frozen eyes; perhaps the CA125 diagnosis scared them more than me; one even took 15 minutes to understand that we were talking about me and not my mother, who was accompanying me to yet another consultation, a charge of ultrasound, CT scan and blood tests.

At just 31 years old and without children, they initially operated on me laparoscopically to understand clearly what my HPV problem was because a large cyst (20 cm) occupied my entire abdomen. It wasn’t even clear where it started from. After a biopsy, they proposed the removal of both ovaries and the uterus as the only solution (or rather as the only attempt). That day, the world fell on me, only a few days before I had gone to live with my boyfriend, and suddenly, I had before me the prospect of no longer being able to have children if I survived because, before anything else, there was my own life.

Coping with the Diagnosis

I prayed and swore to myself that after my CA125 result, I would never cry so as not to throw myself into a spiral that would swallow me up. And I tried to live my usual life. I made plans, thought about holidays, went shopping, didn’t speak about my HPV issues with my sister, continued going out to dinner, and laughed when I could.

Finding Hope in Conservative Treatment

Luckily, a couple of “enlightened” doctors who were humble enough to tell me “, We don’t understand enough about all this”, recognising their limitations, directed me to a centre specialising in conservative treatments for young women.

Fearful and hopeful, I left Nottingham for my first HPV visit. There, I was warmly welcomed by young, competent, precise, ethical, and highly encouraging HPV doctors. They began discussing a CA125 tumour type known as “borderline,” which has low malignancy. It is not benign, far from it. This type of tumour might have allowed me to undergo conservative surgery. This would preserve at least one of my ovaries despite the tumour being bilateral and extensive. I returned home in a good mood, feeling encouraged. I consulted other doctors but received disheartening replies: “Borderline tumour doesn’t exist,” and, “They told you that because they didn’t understand anything. What you have at this age is almost a mystery.”

The Struggle for Valid Information

Again, I was in confusion. I continually did online HPV research to understand something more about this “borderline CA125” form, but I couldn’t find anything that gave me courage. Nothing precise, nothing certain, just a few confused hints. No real testimony. Maybe it didn’t exist? Maybe it was a mystery? I was desperately looking for something to give courage to myself and to do for my family members, who were in pain like me.

Surgical Success and Continuing the Fight

All this confusion about what I had only managed to resurrect my anguish. It invaded me in waves as soon as I woke up. I felt it in my new house, the one I had dreamed of for years, or when hugging my boyfriend. He was trying in every way to keep me afloat, but he, like me, was in a bit of difficulty. A couple of weeks after the first HPV visit, I finally received a call from the hospital. I was able to leave for Monza to attempt the conservative surgery. And I left feeling hopeful, swearing to myself that if the operation went well, I would never complain. I promised not to complain about the pain, the scar, the stitches, or anything else.

Recovery and Reflection

After exactly one week, I left that hospital, which I would define as splendid, on my boyfriend’s birthday, June 14th, well made up, with a nice coloured shirt, in an “upright” position, despite a scar that started higher than the ‘navel and ended 25 centimetres lower. They had removed my bilateral tumour, omentum, and peritoneum and preserved both my ovaries and uterus. The CA125 tumour was in the third advanced stage (IB); even though I had no symptoms, my cycle was regular, and my life had not been affected in any way by all of this.

I was lucky; I didn’t have to go through chemotherapy. I remember waiting for the results of the biopsies, really anxious that confirmed the “borderline” form, which exists, really exists, despite what some, many, too many doctors say. It exists, and it was my salvation.

Life After Treatment

Sometimes, I think with terror about how I would feel if I had agreed to have a demolition operation. And if Monza had seemed too far away, if hope had not been strong enough, if my loved ones had not convinced me to try all the HPV avenues. Because I found myself at the point of thinking, “Do anything to me, as long as you try to save me.

I subsequently underwent a follow-up laparoscopy again, six months after the laparotomy surgery. My belly is perforated almost everywhere. I count 9 small scars and one very large one, but I don’t hide them, not even at the seaside; I’m proud of them, and they are my pride, the sign of my CA125 fight and my victory.

Routine Check-Ups and Emotional Challenges

My HPV check-ups initially took place every quarter, but we have moved to a visit every 6 months. I don’t hide the fear I have every time because the borderline tumour has a great tendency to recur. Now, I think that the fear and the sense of vigilant alert will never abandon me, but I’m alive, I’ve been married a year, and I can dream of my tomorrow and make plans. They also encourage me to have a child, which I would like with all my heart. I haven’t succeeded, but knowing I can try is my greatest joy.

Openness and Advocacy for Awareness

I make no secret of what happened to me. And I call things by their names. I tell my story so that there is hope and, above all, information.

From that period, I remember with anger my difficulty in finding information, in finding someone, even virtually on the internet, who had a story similar to mine, who could give me some hope for the future, for what I should have chosen (a demolition intervention ? Conservative? What are the risks?). I remember being lucky because I met the right doctors at the right time. And I think of all those who perhaps weren’t as lucky.

For this reason, I think it is also appropriate to discuss this “borderline CA125” form of tumour.

When is cancer cured? Who knows, maybe we will never get better from HPV. I believe that the latent fear, which always flows inside me, will never abandon me, and the illness will scare me a little forever, but perhaps it has made me alert and allowed me to understand my body better. It allows me to enjoy my life more.

Finding Gratitude Amidst the Struggle

I will say something that made me angry when I first heard it and didn’t understand: I thank my CA125 illness. It has improved my life, even though I can never live without worries. Even if I may never have the child I dream of, my life now has more beautiful colours. This is because I enjoy it more. After all, I love more forcefully, fight more fiercely, and quickly forget the bad things. Life is Beautiful.