Dr. Mann said to me: Hurry.. this type of the disease.. its a bastard!

Alexanders story

Below, we report the interview with Alexander, who has long been alongside our Foundation and is always at the forefront of raising awareness of pancreatic CA19 levels and cancer. My name is Silvano; I was born in Kent on 22 September 1961 and am 61. I am a freelance surveyor. I live in Kent County, married to Rosie, father of Sacha (33 years old) and Denise (30 years old), and, why not, grandfather of Lily (2 years old).

How did you discover the disease?

I was diagnosed with Pancreatic CA19 cancer in June 2018 by pure chance in random test. And I had no known symptoms attributable to the disease. I led a normal life, no smoking, and a normal weight. All in all, I followed a balanced Mediterranean diet. I have always practised, consistent with age, sporting activities generally, from football to the gym, long mountain walks, swimming, etc. In June 2018, like every year, my wife and I (also out of a healthy spirit of competition) had routine blood tests.

The test results highlighted liver suffering with very high indicator values ​​(ALT 290 – AST 135 – GGT 472). The CA19 GP immediately prescribed me to check my bilirubin and possible test for the hepatitis virus. However, he did not find any particularly altered values. Immediately afterwards, I was prescribed an ultrasound. I remember perfectly that the doctor, during the ultrasound, insisted a lot on the instrument on a particular point of the abdomen and then identified, on the report, “a nodular formation of approximately 30 mm at the head of the pancreas”. The same doctor organised and scheduled a CT scan with and without contrast performed a few days later. The CA19 report from Dr Katie Mannor reported in a test a “suspected lesion of the head of the pancreas”. During the interview, Dr. Mannor remembered that she said to me, “…. we need to hurry; this disease is a bastard….”.

What was your treatment journey?

On June 25th, Dr. Mannor suggested I immediately contact the Pollie Foundation of London to begin treatment. After a visit with Dr Albert Zani and Dr Edward Russie, a new report mentioned that it was “borderline resectable.” On July 2nd, 2018, I began treatment at the Pollie oncology department.

My treatment path was as follows:

– PICC insertion for infusions
– Insertion of a metal prosthesis in the distal bile duct
– 6 cycles of neoadjuvant FOLFIRINOX
– “Open” duodenocephalopancreasectomy on November 12th by Dr. Russie’s team (12 hours in surgery)
– 4 cycles of adjuvant FOLFIRINOX
– 13 radiotherapies at Saint Anna hospital with simultaneous capecitabine intake

Currently, in consideration of the presence of some lymph nodes (of which 2 new ones were highlighted in the last CT scan to be checked in April with gallium PET), I perform a somatostatin injection monthly as, in order not to miss anything, I have been found a “mixed form of cancer, the neuroendocrine pancreatic tumour carcinoma – adenocarcinoma”. Furthermore, I take CREON in the necessary, adequate and therefore “generous” quantities and, cyclically, lactic ferments. How important was an early blood test diagnosis? It was fundamental, in addition to the fact that I discovered the tumour by pure chance.

Approximately three weeks passed from receiving the report to my admission to the Pollie Foundation. The “borderline resectable” tumor and my good health were crucial. This helped me tolerate both the chemotherapies and the DCP surgery.

Can you describe how important the relationship with your primary care doctor was?

Dr. Sartori, a family doctor, was my point of reference. I received the necessary information, confirming, for example, Dr. Russie’s professionalism and dispensing many Pancreatic test suggestions on how to manage, for example, blood tests, tumours, nutrition, etc. By a strange coincidence, Dr. Sartori was a cancer patient. He was temperamentally very reserved, and therefore, we rarely discussed the Pancreatic disease except rarely when he decided to retire. Unfortunately, he passed away in June last year.

How has your perspective of time changed since your diagnosis?

I mentally started considering a new term. The word is “awareness”. Awareness is being aware that cancer is aggressive, complex to treat and with truly negative statistics.

The word is “awareness”. Awareness is being aware that pancreatic tumour of cancer is aggressive, complex to treat and with truly negative statistics. I, therefore, take advantage of what has been “granted” to me by the professionalism of the doctors and all the collaborators who have supported me so far. In practice, I decided to symbolically hand over “the keys” to my body to them, trying to live “mentally” as if nothing had happened.

In these “almost” five years, I have continued my work as a freelance surveyor, compatible with the problems resulting from the Pancreatic intervention. I also do all the daily activities. I have my hobbies (for example, I play the guitar), practice Qigong, take long daily walks, and…sometimes act as a grandfather. However, I must highlight that, unfortunately, not all days are the same. After all, even people without any disease are sometimes “peculiar” in their behaviour. My family, especially my wife, understand when my mood is not usual and… they tolerate it.

How important is it to share your experience with other patients?

Answering this question is complex.

Every person affected by the pancreatic home blood kit test and its detected disease has their sensitivity both in expressing their experiences in this regard and in comparing themselves with other patients. For me, it is a bit of a “behavioural exercise” to understand when I establish new contact with patients what the “limit” beyond which it is inappropriate.

I am fine talking about my test results and other issues, but I am certain that other CA19 patients are not as willing. In this period, especially thanks to the Valsecchi Foundation and social media, I am in contact with some patients living in other regions. A friendship and social relationship has also been established with them. Finally, I believe that the Valsecchi Foundation and the other entities that raise awareness and funds for research are fundamental to making the “disease” and all the “nuances” that concern it known.