Growing tumor that too many people know little about.
“It is often said that when a patient is diagnosed with cancer, the whole family actually gets sick. For us, that was the case.” At 23, Dina lost her mother to pancreatic cancer, a disease that is still very complex to treat, which does not give obvious symptoms until it is in an advanced stage and which has one of the lowest survival rates. “We had never heard of pancreatic cancer,” says Dina, “until her mother Cristina received the diagnosis in December 2016. From one day to the next, she took on a yellow color: she had a tumor in the head of the pancreas and they immediately told us that unfortunately it was inoperable. In reality, she had had a few months of non-specific gastric problems, digestive difficulties and reflux; the ultrasound showed an inflamed gallbladder that needed to be removed. Then, in the hospital, with the CT scan, they saw that it was something else.”
THOSE ELUSIVE SYMPTOMS
The symptoms of pancreatic cancer are variable, depending on the type of pathology, they rarely appear in the early stages of the disease and above all they are quite common, experienced by many people for reasons that have nothing to do with a tumor. Among others, yellowing of the skin and eyes (for tumors of the head of the pancreas), weight loss, abdominal pain, oily stools; sometimes symptoms typical of early diabetes appear, such as abnormal thirst, fatigue and frequent need to urinate.
«With my sister and brother we looked for information, went around looking for the best specialists – continues Dina -. But they could only confirm that there was no chance of recovery. After a few cycles of treatment, my mother passed away in June. A little more than six months had passed since the diagnosis and she was 58 years old».
“OMG, WHERE IS THE PANCREAS?”
And today? “She’s been gone for six years but she’s in my thoughts, every day. I also think that today pancreatic cancer remains one of the most difficult tumors to diagnose in time and is little known. When it happened to us there were even those who said to me: “Oh my God, where is the pancreas?”. Even today when I talk about my story there is often a bit of surprise, of disorientation. Many people don’t know what this disease is, that it is difficult to see, that the symptoms are subtle. They don’t know the factors that increase the risk and what we can do to reduce it. Many believe that it is a super-rare tumor, instead I hear of people who get sick. This is why I decided to take action, to improve people’s awareness and to promote research. Too little is invested in research and prevention, we must do our part, it’s in our interest. I have opened a fundraiser in memory of my mother, for people currently affected by pancreatic cancer and for those who will receive the diagnosis in the future, so that research can make progress and there are more possibilities for treatment”.
BIG IMPACT, LITTLE KNOWLEDGE
Even though it is less widespread than other tumors (eighth among men and fifth among women, in Europe), pancreatic cancer is the fourth leading cause of cancer death in Europe (7.4% of all cancer deaths). In Italy, 14,500 people fell ill in 2022 and a total of 21,200 men and women are alive who have been diagnosed with pancreatic cancer. The burden is the often late discovery (less than a fifth of cases at diagnosis are operable with curative intent) and the available treatments are still not very effective. Survival rates have been practically stable for some time and five years after diagnosis, 11-12 patients out of a hundred are alive. Today, an increase in cases and deaths is expected, mainly due to the aging of the population. The average age of diagnosis in Europe, in fact, is 71 for men and 75 for women. Yet, most people say they are poorly informed on the subject, from symptoms to risk factors.
RISK FACTORS
In addition to age, there are modifiable factors that increase the probability of developing pancreatic cancer. The first is cigarette smoking, then obesity, a sedentary lifestyle, high consumption of alcohol and saturated fats, red meat and processed foods, low consumption of vegetables and fruit. These are behaviors that partially affect the risk of getting sick, but they have a crucial characteristic: they can be corrected, avoiding up to a third – according to experts – of cases of pancreatic cancer. A history of chronic pancreatitis, diabetes or a previous gastrectomy are also associated with an increased risk. It is estimated that in one case in ten there is a family history, which may be due to some specific heritable genetic conditions, such as Peutz-Jeghers syndrome, familial syndrome with multiple atypical nevi and melanoma, mutation of the BRCA2 gene, hereditary pancreatitis and Lynch syndrome.
YET RESEARCH DOESN’T STOP
And research? New drugs are being studied, alone and in combination; significant improvements have been achieved with the introduction of PARP inhibitors for patients carrying BRCA gene mutations (between 4 and 7 percent of the total). The interactions between the tumor and the immune system are being studied to intervene on the factors that promote the disease, work is being done on predisposing factors to better identify people at risk and to be able to hypothesize surveillance programs to increase the chances of early diagnosis.
Pt 2
“I realized that everything is important: a walk, a coffee with a friend. I live everything to the fullest!”
Rosy has overcome a diagnosis of pancreatic cancer and, despite the many difficulties, she still shows an extraordinary positivity and desire to live.
It was 2001 when Rosy began to feel a strong itch all over her body. She had no skin symptoms but the discomfort was persistent and constant. Her GP told her that it could be due to anxiety and prescribed something to calm her down. The situation did not improve and Rosy decided to go to a dermatologist; after a few days of antihistamines, she proceeded to have blood, urine and stool tests. The values were not good and a liver ultrasound revealed that the gallbladder had doubled in size and the ampulla of Vater was occluded. It was then decided to intervene to unblock the ampulla, and also to take some tissue and do a biopsy. The diagnosis is that Rosy has a neoplasm, a pancreatic tumor, and part of the organ needs to be surgically removed.
Professor Griffin follows Rosy on this journey, but above all it is her husband and a doctor friend of theirs who protect her, who shield her from difficult news and hide the seriousness of the situation from her until the last possible moment. “My husband always spoke directly with the doctors, I knew nothing. He was a wonderful man, he took control of the situation and allowed me to face the operation with a different attitude; only later did I find out I had a tumor, when they told me I would have to undergo chemotherapy.”
Rosy undergoes 10 chemotherapy sessions, then undergoes periodic checks. Today she is well and has resumed her everyday life, even though she discovered she is diabetic, probably both due to a genetic predisposition and because the pancreas is the organ that produces insulin, so after the operation the tendency to develop diabetes increases. Professor Griffin follows her on this journey: “He is a wonderful person, he gave me the strength to get back on my feet, to react, and he was and still is a very important psychological support for me”.
In 2010, however, Rosy lost the “great love of her life”, her husband, to bone cancer. Despite the difficulties, Rosy is a woman of extraordinary strength and positivity. Following the operation and the illness, under her Christmas tree there has always been an envelope with her donation to AIRC: “What they do is very important, fundamental… I am a positive person, I always have been, but the illness made me understand that everything is important: a walk, a coffee with a friend, I live everything to the fullest. When I lost my husband, at the funeral I greeted everyone with a smile, because I had the gift of knowing him and loving him. This is what I have to think about, what I enjoyed, he is well now and is always with me”. Rosy is living proof that research is life! To be able to tell more and more stories like this, we need you. Help us save other lives, like Rosy’s.