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NET Cancer Day   10 November 2023

Easily missed.Take a closer look at Neuroendocrine Cancer.

 #LetsTalkAboutNETs    #NETCancerDay

I noticed a noise in my chest every time I breathed. I was 53 when I was diagnosed with lung NETs
PATIENT
Esteve (Spain)

My name is Esteve, I was born in Barcelona and I am 56 years old. I have a great family and I am surrounded by good friends. I have always tried to lead a healthy life, eating well, doing sports, and without bad habits.

One day in spring 2018, I woke up in the morning, and I noticed a noise in my chest every time I breathed. As the days passed and I did not improve, I asked to visit the pulmonologist, who prescribed a gastric protector thinking that it was reflux, but it did not make me improve. In the end, he decided that I had a CT scan, which revealed a tumour of about 4 cm in diameter.

After an endoscopy with biopsy, the report indicated that it was not benign, but the doctor explained to me that, among the bad news, the luck is that it was neuroendocrine. He told me that they were slow-growing tumours, that they had a good prognosis and that I could have a good quality of life. Still, it had to be removed. So, I went into an operating room, from which I left without two lobes of the right lung.

After that, I was recommended adjuvant chemotherapy treatment with cisplatin and etoposide, which damaged my auditory nerve and left me with only 50% hearing.

At the end of 2018, I began to have symptoms that I had not previously appreciated. Every time I ate a little more than usual, I had abdominal pain. In December these pains began to be quite unbearable.

Taking advantage of a CT scan to check my lung, the doctors also did the abdominal part. The report indicated that there was a tumour in the pancreas, with metastases in the liver and some bones. Knowing the type of lung tumor, there was a high possibility they were NETs too. The world came over me.

The oncologist told me that it would be best to be referred to a hospital where there were doctors specializing in NETs, ​​and I did. On the first visit, the oncologist’s words were “your disease cannot be operated on, nor can it be cured, but those of you who suffer from it have a long way to go and today there are different types of treatment that make this disease one of the most prevalent types of cancer.

I had three tests done: FDG-PET, Octreoscan, and Ga 68-PET. With the results it was very clear, they were NETs.

The physician explained the treatment to me, which was to be with somatostatin analogues, and they offered me the possibility of entering a clinical trial (Axinet) and I decided yes. I started with it in March 2019.

In August of that same year, I began to feel tired and urinate a very dark colour. My liver was swollen and malfunctioning. Everything pointed to a tumour progression that was pressing on the bile duct. I had to leave the clinical trial and they changed my treatment to chemotherapy (Captem). They also placed a prosthesis in that duct.

In mid-2020 I was switched from Captem to somatostatin analogs and at the end of the year I started 4 sessions of PRRT. Now I am pending the results.

It is a long experience to this day. During these three years, I have learned several things that are very important to me.

The first is that I have full confidence in the medical team that manages my illness. Our healthcare staff is made up of great professionals.

But I have also learned to appreciate each day, changing the priority of everyday problems, valuing the people who appreciate me, and sharing pleasant moments with them. Enjoying my wife and son, but most importantly, enjoying myself. I have shared my experiences with different groups of patients, listening, explaining, and ultimately giving each other mutual support that we all need at some point.

We do not know anything about our future, which for cancer patients is more uncertain, but technology in the world of medicine advances, treatments are increasingly optimal, and our quality of life can improve.

In the end, we must never lose hope. We have to be strong, raise our voices, and fight so that, in a few years, we talk about a disease that at that time will be perfectly curable.

That day will come!

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NETs are more common than brain, ovarian, and cervical cancer and incidence is on the rise.

We need the help of our global community to raise awareness and improve diagnostic times and the quality of life for NET patients around the world.

On November 10, help us spread the word

Know the symptoms. Push for diagnosis. #LetsTalkAboutNETs