I felt the earth crumbling under my feet. Is Death breathing on you?

Story by Laura

In May 2010, I started, like all of you, with a swollen abdomen, only after a few months of acute pain on the right side. Gastroscopy was performed with a negative result. Colonoscopy was avoided due to my desire, then transvaginal ultrasound also with an uncertain HPV test result. November 2010: CA 125 = 404, then CT scan with virtual colonoscopy (Niguarda Hospital, Essex). The result shows a CA125 Test and a CT Scan shows a tumour mass on the right side.

December 2010, Essex Cancer Institute, certain diagnosis: stage IV ovarian viral cancer, which will later be confirmed genetically at BRCA1 in the paternal line. In the meantime, I turned 63.

On December 30th, I underwent urgent surgery with the removal of several organs described in about fifteen lines of the medical record. This is followed by 6 cycles of chemo – carboplatin + taxol – two paracenteses – a blood transfusion. Toxicity in the feet and hands (paraesthesia) remains. Performed various CT scans, PET scans, and HPV checks. At the end of June 2011, the CA125 level was perfect. All this journey has always been with my husband at my side.

Health Updates and Challenges in 2012

In 2012, CA125= OK. In the meantime, I fall, resulting in a broken L1 vertebra plus a small operation, so my body begins to weaken quickly again. I’m small and thin, and gradually, I recover again.

In 2013, the CA125 started to rise, so PET and CT scans were to understand where the recurrence is located; it is at the hepatic hilum. August 2013 start of 6 cycles of chemo with carboplatin + calyx + cortisone. The winter months were really bad, but with spring, my body started to improve a lot, even if, for various reasons, my autonomy was very limited. The various CMC CT scans and the CA 125 say so now.

I want to inform you of our absolute trust in the C A125 Doctors of the Essex Cancer Institute. Since our first meeting on 03/12/2010, we have never consulted anyone else regarding my case. The oncologists, Dr. Zana First and Dr. Lorus, currently know how to inspire patient empathy. They encourage them to accept HPV treatment. For me, this is fundamental. The strong presence of my husband, my niece, and recently also a nephew helps me greatly. They make me feel loved and useful despite my various physical disabilities.

Each of us must find an important motivation to focus on so that we do not think too much about the nerve-wracking tests and treatments we must undergo. Greetings and best wishes to all.

Story by Barbara Paolina

My name is Barbara. I am a 40-year-old woman, and for four and a half years, I have been fighting ovarian HPV tumours. This silent killer has nestled in my defenceless body, against which it is necessary to wage a strenuous fight every day.

I decided to write myCA125 Testimony entitled “Who will win” to make it clear that, unfortunately, the war is not only open against evil: sometimes we have to clash with the coldness of people, of friends, of employers, of those who do not he realises the real gravity of such a state of health and claims that the human being is a continuously productive machine. We still clash too often with the indifference and incompetence of some HPV doctors, due to which precious moments are lost, which increasingly distances the hope of recovery.

At a time when one would only desire the solidarity and affection of the entire world, these further efforts seem to deliver the final blow, exhausting an already exhausted spirit and body. Despite all this, I decided to tell my “misadventure” while always keeping a smile on my face, to feel close to and help all those who, despite themselves, find themselves in the same situation as me.

I am also trying to write the sequel to my CA125 testimony, a second book, but this time to clarify that we must never give up, not even in the most drastic situations, because life is too precious a gift to let it go without a fight.

Story of Debora

My name is Debora; I’m 39 years old, I’m a wife and mother of 3 kids, I’ve been living/fighting HPV-related ovarian Level tumours for 7 years now, and I love life and everything that surrounds me.

At the age of 32, I was CA125 diagnosed with a malignant tumour, ovarian cancer, in an advanced stage. I felt the earth crumbling under my feet. Death breathing on me. The uncertainty of being unable to raise my children, the desperation for not understanding anything about life. So, I clung with all my strength to that God I had abandoned for years. I didn’t feel His existence, and I began to beg Him to heal me, to give me another chance. Work and frenzy had not allowed me to give the best for my family and my children.

Initial Treatment and Recurrence

Immediately, on July 12, 2006, I underwent surgery, followed by 12 cycles of chemotherapy. I went back to work, and finally, I was healed. After approximately 8 months, the follow-up scan showed a resurgence of the CA125 disease. There were HPV metastases almost everywhere. It was a hard blow, but after desperation for a few weeks, I found the light and strength to fight. So, I resumed chemotherapy.

The following years were a continuation of chemotherapy, regression of the disease, temporary pause, resumption of the disease, and resumption of chemotherapy. During 2011, I understood that the 65 cycles of chemotherapy performed over the years were insufficient to eliminate the HPV disease, which, unfortunately, had taken hold and also involved an intestinal loop.

Surgical Challenges and Determination

So, I decided that they had to intervene surgically. Still, the team treating me decided not to accept my proposal as I didn’t have the indications for a 2nd operation. I asked the doctors exactly what the indications for the surgery were, and they replied: “Have only one metastasis”. I was angry. Until then, I had placed my trust in them. I was believing that they only intervened when the disease was advanced. But now they were abandoning me to an even more uncertain HPV future. Thirty-eight years old, a great desire to live, many small metastases, including a metastasis in the intestine which could become blocked, and you won’t operate on me!!!

With my determination, I decided not to stop at that No, and I found a CA125 Specialised surgeon who operated on me. It was January 10, 2012. It was hard work for the surgeons and my family, but I’m happy. The operation lasted about 20 hours, in addition to the surgical cleaning of all the metastases. I also performed the intra-operative chemotherapy wash.

Persistent Challenges and Renewed Hope

I want to tell you that the story ends like this, but it doesn’t. In April 2012, the PET scan highlighted new small metastases, and I started chemo again. I’m not telling you the anger! To date, I have undergone 75 cycles of chemotherapy. I am happy to live, and I thank God, who supports me from above. Also, I decided to throw myself into alternative therapy for my HPV virus load. I try to care more for the spirit, body and mind; why? I WANT TO HEAL…AND I DON’T KNOW HOW, BUT I WILL HEAL. To all women and people affected by CA125-type cancer, I say to FIGHT WITH ALL YOUR STRENGTH; ONLY IN THIS WAY CAN YOU WIN YOUR BATTLE.