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, and I am still fully employed in the field of Digital Business. My favorite hobby is e-Biking and I am a E-Bike-Blogger too.
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?
My pancreatic NET was diagnosed in 2020. But the first abdominal problems appeared in 2018. After a second biliary colic, my gallbladder was removed. At that time I had a serious pancreatic inflammation. By the beginning of 2019, I had almost forgotten that there had been problems when new abdominal problems appeared. I also had severe impairments of consciousness at that time. At a hospital the doctors misdiagnosed me with “somatic depression”. On MRI scans from that time one could see that the tumor was already growing – but it was overseen. Because I was angry about the misdiagnosis I waited till January 2020. After the pain got really massive I went to a doctor again. Then after a new MRI scan I got the diagnosis: “Pancreatic Tumor of almost four centimeters in size”. Some weeks later my left pancreas was successfully resected. I was informed that I had an atypical neuroendocrine tumor classified as G2. It was removed completely and no metastases were found. The spleen was also removed.
What treatment have you had and how did it affect you then and now?
First of all, there was the successful operation. Since 2020 I take enzymes regularly. And because of type 1 diabetes I take insulin. Every half a year a CT scan was made without findings. Beside that I did not have any other treatment. In April 2023 I got an MRI scan for the first time and 12 small liver metastases were found and diagnosed as a result of the pancreas NET. So far the metastases infected less than 5% of the liver. Now I get hormone injections to stop the growth of the metastases.
What impact has the diagnosis had on your personal life?
All in all I had and still have a relatively normal life since fall 2020. Even the metastases do not affect my life so far. I’ve been working full-time again since the end of 2020, I spend a lot of time with my family, I go on holidays as normal and I have even started new hobbies like e-biking. Believe it or not, my life has even developed positively in various areas after the NET. The main reason is that the disease expanded awareness of the value of a livable life in a positive sense.
What lessons have you learnt along the way (if any)?
A NET can be considered a kind of “luck in disguise” in many cases. I can certainly consider myself lucky that I had a rare pancreatic NET, and not a much more aggressive or otherwise malignant tumor.
Who’s been your hero? Perhaps it was you!
At first all members of my family who were and still are the most relevant persons in my life. In addition, many thanks to all the doctors who support me and my psychotherapist who helped me in 2020 after some postoperative problems appeared. I have no heroes besides that, not even myself.
Did you get any help from a patient organization during your journey?
Yes, in September 2020 I joined the “Netzwerk Neuroendokrine Tumoren (NeT e.V.)“, a NET self-help group. Furthermore I had participated at the virtual NET congress 2020 (virtual because of corona). This was a turning point in my life: For the first time, I was confident through the multitude of examples and information that life after NET can be very worth living. I overcame a lot of doubts in this regard on that single day – I began to accept that suffering through doubts and setbacks is part of the healing success.
In September 2022 I participated again in NET Cancer Day. As I already mentioned: such a Neuroendocrine Tumor Day can be life-changing in a positive sense because there one can meet great people with NET in person – people who even gave me courage for the future. Since that time I have been a member of a local whatsapp channel for NET patients.
How are you now?
As I already said: I still have a relatively normal life. I feel fine – more or less every day. But at the very end it is important for me to point out that I have to learn over and over again not only to live with the current state of the disease, but also to deal with it in the best possible way. No one will ever be able to guarantee that the last three years, which were among the best of my life, will be just as wonderful again in the future. But: It is possible! It is even possible that the next 10 or 20 years will be wonderful – even considering the liver metastases that have newly developed due to my NET.
