We need to talk about pancreatic cancer . We need to talk more about cancer and about those who are struggling, because there are so many of us who are affected, even young people and teenagers ».
This is Chiara’s story.
GIVE SYMPTOMS TO DIAGNOSIS
Chiara Betelli discovered she was ill in 2017. «For some time I had a strong itch in my hands and feet. It didn’t pass in any way and I started to worry. I did some blood tests and it turned out that I had high transaminases: a sign of liver toxicity, I told myself. I’m a biologist, I understand some things. Some friends and medical colleagues, at work, reassured me: ‘Come on Chiara, you will have eaten something that has created problems for you. Take some cortisone and you will see that it passes’ ». Indeed, the itch disappears. But not the fears. «I was not calm, the explanation of the intoxication did not convince me and I felt that something was wrong. So one evening in November I went to the ER, alone. And I stayed a week ».
To try to understand what’s behind Chiara’s symptoms and abnormal values, doctors conduct thorough investigations . “Tc and Pet , two biopsies for inflammation of the head of the pancreas, but even when analyzing the pancreatic tissue samples there was no trace of cancer cells. But there were “atypical cells” ». There’s something in the pancreas, and it’s a serious problem . A little over thirty years old, a job, friends, a partner and a small son. What goes through your mind in those moments, when life throws itself to the ground by betrayal? «A thousand questions: why me? What will happen? How long will I be able to live? Who will accompany my child on the first day of school? ».
DIFFICULT CHOICES
The doctors, however, take Chiara by the hand and explain that there are decisions to be made immediately. “I had two options. The first was to operate, a duodenocephalopancreatectomy , a very long name to indicate the removal of the whole duodenum, a part of the stomach, the head of the pancreas and then reassembling everything. A challenging and risky surgery, rarely practiced at my age. The second option was a cortisone-based therapy for a month, to see if the problem was inflammatory, but otherwise it would have been impossible to operate before another two months from the end of the treatment “. Chiara finds herself making one of the most difficult decisions of her life, but she does it quickly, and says “No, let’s work.” (“I’m a very practical person,” he explains to me). Thecomplex surgery succeeds without complications, Chiara continues to have a functioning pancreas and undergoes six months of adjuvant chemotherapy to consolidate the effects of the operation. “I tolerated the drug well, I hadn’t even lost all my hair, I was quite happy,” she says.
THE METASTASIS
Everything goes well for a year, during which Chiara’s life resumes, punctuated by periodic checks. Until the outcome of the CT scan of February 2019 in which lung metastases appear . “They were very small – explains Chiara – so we decided to limit ourselves to keeping them under control, but after six months they showed a growth trend”. We can’t wait any longer and Chiara resumes chemotherapy , this time “much heavier, I didn’t have hair, I was sick”. A long pause, look for the right words. «It is that the vision of what one can tolerate changes a lot. Before the thought of having a tube attached to my arm, of throwing up, I would have said: ‘impossible, I would not do it’. But then it happens, one adapts, and does what he has to“. The cure has its effect, the metastases stabilize.
LIVING WITH THE DISEASE
And we are today. “I ‘m in therapy now, every two weeks . I lead a normal life, I only rest at home on the day of chemotherapy. There are family, work, my interests; besides, I see myself physically normal, and it helps a lot not to notice the melancholy glances of others ». Who or what helps to stand up , and how important are the people around us? «I am very lucky, I was followed in Modena by a team of doctorsexceptional, still today we talk to the cell phone and they do not make me miss their support, if I have doubts or fears they are there. I have a partner, my parents, many friends. I have a baby ». It has the name of a hero, warrior and traveler: Aeneas. «He was two years old when I got sick and he, even now, is the greatest stimulus, because it is I who must be strong . I explained everything to him, he knows that his mother has to put the medicine in the tube, he knows why sometimes I’m tired ».
Chiara’s story
COVID-19, THE VACCINE
These difficult months of Covid-19 emergency have certainly not made life easier. “Unfortunately, the moment is hard. I work from home, but I cannot send my child to school because I am at risk. Thankfully, working in the health sector, I was able to get vaccinated against the virus and can’t wait to get the second dose. Not sending him to school weighed heavily on me: I miss friends, let alone him…. But I also took the pandemic head on, as I am used to: what needs to be done is done “.
THE DECISION TO PLAY THE GAME
Last fall, in the midst of the second pandemic wave and in view of her 37th birthday, Chiara decided to start a fundraiser for pancreatic cancer research on the Insieme platform and, in a short time, she achieved extraordinary results. How did it go? «I have been following the Umberto Veronesi Foundation for some time, also for professional interest. So I decided to open a fundraising campaign on your site , it was simple: I entered a text with my story, I talked about it with friends and acquaintances, a local newspaper wrote about it, a few posts on Instagram and… ». And a chain of solidarity startsthat reaches – and touches – many, many people. «I have also received contributions from unknown people, who however share something of my story and my hope: ‘I don’t know you, Chiara, but instead of buying a panettone I give them to you’. I was pleased, it was not obvious and I did not expect it. I have been doing research for many years, I hope that these funds will be used for research on pancreatic cancer , a subtle disease that also affects young people (even if few know it and very few talk about it). I got to know many patients under the age of 50 who, like me, ask for nothing more than more time to live ».
RESEARCH, LIFE THAT GOES FORWARD
The time spent, the words spent, the commitment to raise money for pancreatic research funding . With an iron motivation, which Chiara does not hesitate to define “even selfish”. “I hope that progress will be made a little quickly, that solutions will be found to control lung metastases. I know I was lucky, in a way, because back in the small percentage of people with a pancreatic cancer inoperable. My greatest hope is to get well, but if life goes on, if research gives us a hand in the meantime and this disease can be kept under control, then that’s okay. I know that medicine is progressing and that more and more specific therapies are being developed. For example, this year I was able to access a genetic test to assess the dose of the drug my body can tolerate, and it is an opportunity that did not exist before and that can make a difference in a patient’s life. I hope so very much ».
BREAK DOWN TABOUS
Some have written to her calling her courageous. «It is not courage. I did it for me. How will it go, it will go, but I do what I can, I put myself on the line: if I don’t fight, who does it for me? “. Chiara says that it hurts her how, even today, cancer carries a load of taboos and stigma. “We need to talk about it clearly, to raise awareness of the fact that cancer exists, and affects even young people . We are many, many guys. And I am happy to have come out with my story. I feel freer , now I can say it out loud: ‘I’m Chiara, I’m 37, I have a tumor, I’m undergoing therapy, I’m keeping my illness under control and I’m living my life’.
