I am Julian , Germany, 33 years old.  Motorcycles are my hobby.

How did you get your diagnosis? How long did it take?

I got my diagnosis with an ultrasound scan performed by a specialist in internal medicine. Looking over the liver, one could clearly see the metastases as the NET had already spread.

It took 2 years from the onset of symptoms and weight loss to the diagnosis of the disease.

What kind of NET do you have? 

NET of the terminal Ileum with multifocal liver metastases. The tumour had already spread to the liver.

What kind of therapies took place? 

• 2012 resection of parts of the terminal Ileum and jejunum with regional lymphadenectomy
• Since 2012 SSA injections (octreotide 30 mg every 4 weeks)
• 2013 and 2014 PRRT with Lu 177 DOTATATE
• 2013 and 2014 TACE right lobe of the liver
• 2019 TAE left lobe of the liver

After the TACE and the TAE I often felt very weak, pain was tolerable. The SSA I tolerate quite well and have no complaints.

How did the diagnosis affect your life? 

As I was quite young at the time of diagnosis, I felt overwhelmed with all of it and found it very difficult to deal with. There was little information and I did not even know exactly what kind of disease it was and where it came from, etc.

During the first years I often felt weak due to the operations and the rehabilitation, and I had kind of lost my joy of life compared to the time before.

Now I am very happy that I feel better, and that I have gained weight. I now look at life in a different way, go for spontaneous things more often, try to avoid stressful events and travel more.  Meanwhile, I cope quite well with it. In daily life, I don’t think so much about my disease as I feel rather well.

Who inspires you? 

I don’t have a special ideal. In hospital and during rehabilitation, I saw young people with even worse diseases and talked to them. And I think that it could have been much worse, and as I have no pain anymore and can live quite well, it is ok for me in comparison.

Did you get support from a patient organization?

I often get information from Netzwerk NET. Once I attended a meeting in Erlangen. I think it is good to have such a platform.

How are you now?

I feel quite well. I have a 2-year-old son with my girlfriend and work normally. Every now and then I suffer from diarrhea, and after the SSA injections I sometimes feel a bit exhausted. But I can live my life well without many restrictions. There were times when I felt much worse and had flushing, diarrhea, fatigue and so on. Therefore, I am happy about how things stand now.

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