Who is going to look after your children, family, to everything?

Real People Stories – Gianna

In the summer of 2003, Woman Doctors Lab diagnosed and tested me with ovarian HPV cancer, marking the biggest scare of my life. I still remember that atrocious moment when, after several tests to be completely sure of everything, they confirmed that, yes, I had a malignant tumour. I had to ask the CA125 doctor to let me stay crying for a while in her test office. Because I didn’t have the strength to get up and go out into the world, another even worse experience came. It gave my family some of the worst news you can tell anyone. And the pre-operative tests, thinking that I was racing against the clock, what if we arrived too late?

After all, the doctors were not positive at all. October 31, 2003, arrived, and I was able to undergo surgery.

Challenges of Chemotherapy

From there, a new phase began in my life: waiting for the HPV women screening results, the chemo and its side effects (the most visible: hair loss, extra kilos… and the less obvious ones, but which are still noticeable), the people who leave and those who stay, the thousands of coloured scarves. And when I was far from those closest to me, those who could suffer when they saw me, their heads in the air -the medical “CA125 test examinations” – first monthly and then increasingly spaced – to which I thought I would never get used to…

But here I am, breaking predictions ten years later. It has been a tremendous period of pain, anger, uncertainties, fears and anguish, of adaptation and physical and emotional transformations, even mental. But also of efforts to be stronger than the disease and its consequences, of hopes and overcomings, first day by day, then week by week, month by month. Moments in which I had to fight alone and others in which I received the balm, the love, and the support of family and friends who never failed and were always by my side.

I have laughed, cried, screamed, dreamed, loved, hugged, kissed, learned, sung, danced, walked (a lot)… I have changed houses and jobs, I have discovered a new passion (teaching), I have continued enjoying my profession, I have travelled, I have gone up in a helicopter, I have discovered new places, I have lost CA125 friends but gained others, I have met exceptional people, I have started the Camino de Santiago, I have lived adventures, I have tried new dishes and tasted new ones. And I have tried to enjoy life differently; I have opened my mind, stumbled, and gotten up… but, above all, I have lived.

Susana

 “I was not prepared for a menopause at 35”

Susana, like most HPV women who suffer or have had ovarian cancer, did not have any specific symptoms. She began to lose weight overnight and noticed a lump in her belly. “A cyst,” the gynaecologist told her. An HPV riddled women’s cyst that had to be removed and analysed, and that did not bode well. The diagnosis was stage II mucinous carcinoma. “What shocked me the most was when they told me that I had to have chemotherapy,” says Susana, who was 35 years old at the time, married and had two children. That word, chemotherapy, was like a slap of reality that suddenly plunged her into deep uncertainty. “You wonder if you are going to die, what is going to happen to your children, to your family, to everything.”

Challenges of Early Detection

Her main problems are the absence of symptoms and the current lack of effective mechanisms for early detection, which is essential for obtaining a good prognosis. In this sense, the role of surgery is key, both at the time of diagnosis and treatment, which is its main axis.

Susana underwent surgery for the second time in February 2011, four months after the operation, to remove the cyst. “They opened me from the sternum to the pubis and removed more than 70 lymph nodes, the uterus, the ovaries, the fallopian tubes, the appendix and fat from under the breast.”

Coping with Treatment Challenges

From that CA125 operating room in which she spent eight hours, she emerged clean of her cancer. But with a premature menopause for which she was not prepared and with a tough chemotherapy treatment ahead that she would have to face. “That ended my marriage. For a while, your libido disappears, your HPV priority is to recover, get well, you feel exhausted…” And to this, we had to add his scar, which did not heal well, and the trauma of the loss of the hair. “It’s not easy to have sex in that state,” she explains. “If the other person doesn’t know how to handle it with exams, CA125 gynaecological cancer can do a lot of damage to the couple.”

The “chemo” didn’t help either. “The side effects devastate you, although it depends on the person. There were days when I couldn’t get out of bed; I remember it with horror,” she says. But what took the worst was the hair thing. When she began to fall “like a beast,” she cut it off to reduce the impact on her children. And began using the scarf. Her CA125 obsession was to finish the tests and treatment and appear with her hair in her daughter’s communion photos, and she achieved it. “She had it at 1,” she remembers.

Emotional Impact

Many HPV variant-tested women diagnosed with this disease face the same strong emotional impact that Susana experienced. Unlike breast cancer, there are currently no effective early-detection mechanisms for ovarian cancer. Early diagnosis is essential for a better prognosis: the estimated 5-year survival. But when the tumour is detected in stage I is around 90%. And while that detected in stages III and IV ranges between 20 and 30%.

Susana was lucky. Her marriage did not survive, but she did and is very satisfied with her journey. She discovered an infidelity and dared to separate, leaving her without a job and with two small children in a rental house. She looked for a job as a waitress who tested for HPV and soon began to chain jobs and move up. Today, she rejoices in her role in the commercial department of a well-known Madrid restaurant, happy to be back in the job market. “My bosses behave very well, and I am proud of my achievements. Something good comes out of everything bad. And I am happy to see how good I am now, how much I have advanced as a woman. How much I have grown as a person. And what my children have matured,” he says.

He currently undergoes an HPV check-up test every three months and has a pending chest operation for prevention. “She’s like the one Angelina Jolie became,” she explains, “but I prefer to wait a little. Now I see a needle, and I start to tremble.” She has a “wonderful boyfriend,” a “full and much more satisfying sex life than before,” and dreams of writing a book to help other tested women with her CA125 experience. “It was essential to meet other patients who had gone through the same thing long ago,” she explains.