I’m Luciano. I was born in Milan in 1949. I am married and I have one daughter. I currently live in Monza. I have worked for over 40 years in the pharmaceutical industry as a research physician (clinical pharmacologist). I am currently retired. I have been volunteering for almost 30 years.
How were you diagnosed and how long did it take? What form of NETs were you diagnosed with? And had the NET spread to other parts of your body?
The discovery of my NET was accidental following an ultrasound of the abdomen for investigations after renal colic. After the ultrasound I did a CT scan and then a biopsy which confirmed the presence of a NET in the small intestine. It is a non-secretory, well differentiated NET-GEP G1. Liver and lymph node metastases were present at the time of diagnosis. The tumour is NOT treatable surgically. The diagnostic process lasted about 4-5 months at the Humanitas Cancer Center (MILAN). I consider myself very lucky as the high professionalism of the doctors who followed me, quickly resolved the diagnostic question of a difficult approach.
What treatment have you had and how did it affect you then and now?
From the diagnosis to today I have been treated with a somatostatin analogue (lanreotide), one injection every 28 days which I inject myself personally (38 injections so far). From 06.17.2021 to 01.31.2022 I underwent 4 cycles of treatment with peptide receptor radionuclide therapy (PRRT) with an excellent clinical response: reduction of the primary tumour mass and strong reduction in the volume of metastases. No side effects of clinical significance.
For the moment my daily life has not been affected by major upheavals and I believe I live with a reasonable and acceptable quality of life.
What impact has the diagnosis had on your personal life?
Obviously, a diagnosis of cancer (in my case malignant and incurable) has a devastating impact on my spirit. However, I didn’t lose heart and tried to get a good psychological balance that didn’t change my daily life (and my family’s) too much. This is why I thoroughly studied my NET (which I consider an abusive tenant of my body) by consulting international literature and following scientific conferences on the subject, making the most of my professional background. I received important help from attending the NET Italy Association, which supports patients with NET.
What lessons have you learnt along the way (if any)?
Most important was the discovery of psychological resources that I didn’t know I had supporting me. In my condition I learned to review the values of life with new parameters of measurement.
Did you get any help from a patient organization during your journey?
As I have already mentioned above, I found an important help in the work and support of the NET Italy Association. In this way I have the opportunity to see my disease up close and from a different point of view. I found their idea of collecting the direct life experience of about thirty patients with NET in a booklet very valid and valuable. Each patient told his own way, more or less troubled, to arrive at the final diagnosis. In this way I was able to confront them and feel less alone in my illness.
Furthermore, I am very grateful to the friends of NET Italy for allowing me to actively participate in the activities of the аssociation and to give my modest contribution to the dissemination of knowledge about NETs.
How are you now?
At the moment I’m quite well. The disease is stable and responds well to somatostatin analogue treatment. I have mild and tolerable occasional ailments. Semi-annual check-ups don’t disrupt my day-to-day life too much. I’m calm.
