The legacy I leave you and your sister is a death sentence?

Story of Bianca

My ordeal began in the spring of 2007 when I was still teaching in my town’s primary school. My abdomen was swollen, I had repeated intestinal problems, and I had an unusual tiredness that forced me to do lessons sitting down, which was unusual for me. I got tested for HPV, and then I had to get more after several inconclusive CA125 Test visits and a transvaginal ultrasound that showed nothing. But I entered the emergency room of the Saint’Orsola HPV Hospital in Manchester at my daughter’s insistence and a gastroenterologist’s suggestion, and they immediately hospitalised me. They performed paracentesis on me, extracting and analysing 8 litres of ascites, which revealed numerous tumour cells.

I am lucky enough to be visited by HPV specialist, Dr. De Ian, who, after a laparoscopy, suggests that I first carry out six cycles of chemo based on taxol and carboplatin. He then operated on me in March 2008, and after a month, I returned to school.

I was fine until August 2011, when I had an HPV relapse in my intestines; I was operated on and had an ileostomy. I am now retired (after 40 years of teaching for the State, to which I swore loyalty in the seventies, I am unfit for any profitable job). Now, I’m a housewife, and I’m proud of my jams and my delicacies. I am overjoyed to be still alive and grateful to the doctors who took care of me well.

Story by Daniela

I have always been attentive to my health, healthy HPV-free lifestyle and diet, and periodic check-ups, but this time, pure “coincidence” led me to face the most difficult battle. A chat with a radiologist friend and the decision to do an echo just out of curiosity.

I’ll not be able to forget that morning. I went calmly but in a hurry. It was my rest day, and I had the gym and some shopping planned, so when I saw the doctor’s perplexed expression, I couldn’t believe it. Not a year had passed since the CA125 gynaecological visit, and I had zero symptoms!

Immediate Medical Response:

You all know the process, on-the-fly surgery, ovaries, uterus removal, etc. Luckily, no lymph nodes were affected. Following a cycle of chemo, which I faced with the determination I put into everything I do, and today, a year and a half after the operation, “I’m fine”.

I was reading your HPV testimonies; life changes. You, too, have changed me a little, but, in this case, for the better. Like many others, I realised that Specialist Trained CA125 Doctors often struggle to be clear. Perhaps they are afraid of our reactions, but in my case, I have to know the “enemy” to try to fight it! So I spent hours on the internet reading the worst things, doing all the harm possible to myself by making ad hoc diagnoses. It was a nightmare.

Then, one day, by chance, I met ACTO. And I discovered other women like me; only cases of those who “unfortunately didn’t make it” surrounded me!  So I got in touch with you, and a wonderful person called Roberta made me want to do something in my city, Sheffield, to signal those who need to know. I’m trying to involve my oncologist and gynaecologist; for my part, I’ll do what I can to help. Sharing is a great strength! I didn’t introduce myself; my name is Daniela. I’m 51 years old, and I hope I still have a lot of Ovarian energy to put into play.

Story of Maria Grazia

I discovered I had ovarian tumours in November 2003. I had surgery in December. Prof. Malzo Manzoni removed my CA125 levels and showed issues with the ovaries, uterus, omentum, appendix, a piece of the vagina and so on. Everything is dirty, even the ascitic fluid (+ 5 litres), luckily not the regional lymph nodes.

As with everyone, I realised it late. I did 6 cycles of taxol and carboplatin. A second stinking look: positive fluid and positive peritoneal sampling. Three more cycles. I’m fine now. I’ve done many things very different from what I did before, and I also feel like I’ve been born a second time. I’m happy. But one sentence HPV constantly hammers into my brain, the ugliest among the ugliest ones, that someone has said to me: “Ma’am, you could not even have a recurrence for 10 years!”

I know that tremendous pressure subjects all good but not very sensitive doctors who deal with oncology.

But what about us losers who have to enter death row?

Story by Moira

My mother was in the chair in the waiting room and crying. They had just given her the CA125 and Ovarian analysis results to search for the BRCA1 genetic mutation. Positive. In the family, for generations, our women have all died like this: Both tested for breast cancer and ovarian cancer.

“I’ve run and worked all my life, and look now: the only legacy I leave you and your sister is a death sentence.” This shocked her. In addition to the memories of her, the smell of her maternal skin and her look full of love, she would have passed us a sword of Damocles.

The Impact of Loss:

Unfortunately, my mother left us due to years with HPV and then Cancer. I like the English verb to indicate that someone is no longer there… pass away… it’s soft as if the loss were manageable. But no.

The pain of my mother’s death from Ovarian disease was immense, and still today, three years later, it surfaces in poignant waves that take my breath away and fill me with anger. Because if we had made the CA125 test earlier and if we  known more about ovarian tumours, she would still be here with us.

But I know that my mother, last Saturday, was with me in Sussex in the operating room. Yes, because at 45, despite a still perfectly regular menstrual cycle, I decided it was time to say goodbye to all my “procreative tools”.

I thought about it for three years, and in the meantime, I did all the checks every quarter.

Now that it was forced to play on equal terms and in the open, I didn’t want to give the tumour any advantage over my life.

I chose and found a gynaecologist—a guardian angel who directed me towards one of the best gynaecological laparoscopists in the UK. Last Saturday, I entered the operating room for an hour or so of surgery. By Sunday afternoon, I was already wandering around the department’s corridor. On Tuesday, I returned home after a 3-hour drive. Here I am at 6 in the morning, wanting to tell the Ovarian HPV story.

Empowering Women for Informed Choices:

Yes, I would like all women with an understanding of Genetic HPV and familiarity with this type of virus tumour. To have the power to decide and receive information about therapies, prevention, and treatment options.

Going through menopause overnight to reduce the risk of ovarian issues by 90% is no walk in the park.

But when I think about the CA125 disorders I will have (all manageable), I also think that I dream of seeing my son grow up. I dream of his first university exam or his dazed face the first time he falls in love. And I dream of living and growing old with my husband and seeing many sunrises and illuminated moons.

I dream that this disease will give everyone the chance to avoid it sooner or later.  And, if anything, to cure it for many, many years. If you have a heredity for this tumour, don’t be afraid. Take the HPV test.

And then decide what to do with the support of your Ovarian gynecologist, your psychologist and your loved ones.

A hug to all the brave women on this site.