My name is Barbara. I am 51 years old, I was born in Rome and live in Santarcangelo di Romagna close to Rimini. I am married and I have two daughters of 24 and 19 years old. I have a degree in Tourism Studies and I work as an employee in a well-known Italian company.
I love the sea, taking long walks, and practicing Yoga. I have never had any particular health problems, never smoked or drank. I have always led a “normal” life.
In December 2013, I woke up one morning with my face swollen on one side. I got ready to go to work convinced that in a few hours I would be back to “normal”. Unfortunately, this was not the case. I asked my general practitioner for advice and he suggested an allergy test. We were now close to the Christmas holidays and I was able to see an allergist at the Rimini hospital only at the beginning of the new year.
In the meantime, the symptoms, especially in terms of skin and swelling, were increasing: prominent abdomen, swollen legs, strawberry-red spots that appeared and disappeared after a few hours. Difficulty in digesting and the feeling of always being full. Because of these symptoms, sometimes very pronounced, I went to the emergency room a few times but each time they sent me home saying it was only stress.
The doctor, based on what I told him, communicated that I definitely didn’t have allergies and, being an internist, he took me in charge at the hospital, to carry out more and more complex tests, until we reached the diagnosis of Cushing’s Syndrome (March 2014).
Unfortunately, the doctors initially thought it was a Cushing’s disease of pituitary origin, but the tests were negative (MRI of the head and catheterization of the petrous sinuses). The origin was ectopic and after a total body CT scan, we were finally able to have a diagnosis: neuroendocrine tumour at the tail of the pancreas IV stage G2, ACTH secreting with liver metastases. It was operable but it was necessary to first restore the damages caused by Cushing’s syndrome: diabetes, hypertension, low potassium, just to mention the most serious ones.
On 12 May 2014, I had an operation to remove the tail of my pancreas and spleen. I was immediately offered radiometabolic therapy, which was carried out at the Institute for Tumour Research in Meldola, not far from where I live. I accepted without hesitation: 40 days after the operation I started PRRT. I finished 7 cycles in February 2015. A month before the operation I also started Sandostatin therapy, which I still do every 28 days.
I started working again a month after the operation. This illness has had a serious impact on both my and my family life, with serious psychological repercussions. I had to slow down my pace and do only what my body and my strengths could and do.
On my journey with NETs, I have learned the meaning of the term ACCEPTANCE. Accepting and not fighting the things that happen to us, not asking “why me”, but trying to live with the disease and with the problems that life puts in front of me. Obviously, I believe that without my illness I could have offered my daughters a more serene adolescence, not having to constantly mention words as “hospital”, “tumour”, “tiredness” and “hope”.
Luckily I had my parents supporting me: even though living 400 km from me, they moved into my house for as long as necessary to give me peace of mind and help my daughters. In particular, my father was always with me at the hospital, at the doctors’ meetings, and in the ambulance when I was traveling. He had courage and he passed it on to me. He always told me: come on, we’ll make it!
After the operation I met the girls of the association through social networks. I immediately felt they were my friends, so much so that in a few months we became so close that they proposed I join the board of Netitaly, of which I am still a proud member. They have been and are my strength: I am convinced that sharing doubts, problems, sadness, but also achievements, is essential to be able to live with this disease.
I am now well, the disease is presently under control; I carry out a full follow-up every 6 months. NETs are part of me and my daily life, what should I do? Fight it or, better, live with it in balance?
