Select Page

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
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!

Browse Stories

View these stories in your language by using the Google Translate button above.

Nicholas (Kenya)

My name is Nicholas Rotich. I am a Kenyan. 47 years old. Hobbies: Farming and environmental conservation How were you diagnosed and how...

Read Story

Angela (Brazil)

My name is Ângela Maria Rocha, I'm 54 years old, I'm from Brazil and I live in Minas Gerais, in the city of...

Read Story

Oliver (Germany)

My name is Oliver. I live in Germany, I am 59 years old, I have been married for 35 years, I have 2 children, 4 grandchildren...

Read Story

Yu Qi (Taiwan)

Age: 51 years old Name: Yu Qi Country: Taiwan Hobbies: travelling, making new friends, learning new things. How were you diagnosed and how...

Read Story

Luciano (Italy)

I’m Luciano. I was born in Milan in 1949. I am married and I have one daughter. I currently live in Monza...

Read Story

Karin (Belgium)

I am Karin from Belgium, 64 years old. I live in a green village in Limburg and am a mother of 3 children and...

Read Story

Anne (The Netherlands)

My name is Anne Zeijpveld. I’m 45 years old and was born in The Netherlands, but have lived in Seattle, United States...

Read Story

Jasmyn (USA)

My name is Jasmyn Ramirez, I’m 21 years old from California in the United States! I’m a fourth-year college student majoring...

Read Story

Amanda (Australia)

My name is Amanda and I live in Australia. I am a lover of netball. My favorite thing is to take my...

Read Story

Mei-Ying (Taiwan)

Name: CHEN, MEI-YING, Female Age: 65 years old Hobbies: Hang out with friends and do outdoor activities. How were you diagnosed and how...

Read Story

Michael (South Africa)

My name is Michael Meredith, I am 75, married and live in the Western Cape in a beautiful village called Riebeeck Kasteel, which...

Read Story

Duncan (South Africa)

My name is Duncan Macduff and I am 45 years old. I am fortunate to live in the beautiful city of Cape Town...

Read Story

Ruben (Argentina)

I am Ruben, 57 years old, from Argentina. How were you diagnosed and how long did it take?  I had diarrhoea and rectal...

Read Story

Mariska (Netherlands)

My name is Mariska Masselink, I live in the Netherlands. My age is 53. I love walking my dog, a wonderful Dachshund, reading...

Read Story

Michael (Israel)

Michael Rosenberg, born in Bucharest, Romania on 26/12/1952. I emigrated to Israel in 1970 at 18 years of age, studied Computer Science. Lived in South...

Read Story

Julian (Germany)

I am Julian , Germany, 33 years old.  Motorcycles are my hobby. How did you get your diagnosis? How long did it take? I...

Read Story

Jean-Pierre (Canada)

My name is Jean-Pierre Durand, I live in Quebec, Canada. I’m 69 years old and my hobbies are travelling, camping, hiking, skiing...

Read Story

Geoff (Australia)

My name is Geoff Tomlin, 76 years old and I have lived in Tasmania, Australia all of my life. I have been married...

Read Story

Adriana (Uruguay)

I am Adriana, 67 years old, from Uruguay. How were you diagnosed and how long did it take?  It took 10 years. Since 2012 I...

Read Story

Paul (USA)

My name is Paul Kaczmarek. I am 48 years old and I live in the United States. I like being in the outdoors...

Read Story

Lydia (UK)

My name is Lydia, 16 years of age and diagnosed with MEN1 when I was 4 years old. MEN1 is on my dad’s...

Read Story

Dr Sugandha Dureja (India)

I am Dr Sugandha Dureja, MD, FEBNM, a Nuclear Medicine physician working in New Delhi India. I am trained in Theranostics from...

Read Story

Tanisha (USA)

My pheochromocytoma journey began in the late year of 2008. I didn’t have symptoms but a light fainting episode. I went to...

Read Story

Simon (Canada)

My name is Simon and I’m 36 years old. I live in Quebec, Canada. I’m an aerospace engineer and a proud...

Read Story

Richard (Kenya)

My name is Richard Kiprono Ngeno from Kapsoit, Kericho County of Kenya. I am a 37-year-old man and a small-time farmer. My...

Read Story

Pauline (France)

I am Pauline, 33 years old and I live in France. I love board games, knitting and swimming. I was discovered my NET...

Read Story

Julie (UK)

My name is Julie Rose, I am 48 (49 in November) and I used to enjoy taking part in a lot of fitness, running...

Read Story

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...

Read Story

Dr Mark Lewis (USA)

My name is Mark Lewis. I am living in the USA but was born in Scotland. I am 42 years old. I work...

Read Story

Dirk (Belgium)

Dirk Van Genechten, Belgian (Flemish), 62. Hobbies: my grandchildren, traveling, good food and wine, petrolhead (cars and motorcycles). How were you diagnosed and...

Read Story

Barbara (Italy)

My name is Barbara. I am 51 years old, I was born in Rome and live in Santarcangelo di Romagna close to Rimini...

Read Story

Sue Williams (UK)

2018, I had lost two stone, busy life, family and full time job, at 56 I thought that was how life was? Relaxing after...

Read Story

David Corbin (UK)

I was first diagnosed in August 2019 and after seeing multiple consultants in a short period of time I was referred to Sheffield...

Read Story

Andreia (Portugal)

I was diagnosed in August 2013 after 5 years of dealing with a recurring pain attributed to a cyst in my left ovary. The...

Read Story

Amanda (UK)

I was diagnosed as being menopausal at 48 in 2014 and opted for HRT so from then on I was getting regular checks and...

Read Story

Adam Martin (Northern Ireland)

For 18 months I thought I had a food intolerance, or IBS as almost every time I ate I had stomach pains. The...

Read Story

Pauline Mather (UK)

I was diagnosed with neuroendocrine cancer of my pancreas & liver February 2019. I had major Whipple surgery May 2019 at Freeman hospital Newcastle...

Read Story

Marbellys Bayne-Azcarate (UK)

I was diagnosed in October 2015 with Stage IV Neuroendocrine Cancer. I had been experiencing intermittent and unexplained abdominal pain for five years...

Read Story

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