Dirk Van Genechten, Belgian (Flemish), 62.

Hobbies: my grandchildren, traveling, good food and wine, petrolhead (cars and motorcycles).

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?
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 GP sent me to have a scan of the abdomen after I insisted something definitely was wrong. At first complaint I had the usual tests, showing no signs of any disease.

Between first consultation and the diagnose passed about 3 months. But the tumour was already >7cm, so with metastasis and in stage 4.

What treatment have you had and how did it affect you then and now?
Hemicolectomy right. Colon ascendens were removed as the primary tumour had grown into the blood vessels, removing only the tumour was considered too risky. This has hardly any influence on my daily life.

Octreotide scans showed no metastasis, after the surgery and the control scan I was declared cured. But symptoms remained. A dotatoc scan in another hospital did show various metastasis.

What impact has the diagnosis had on your personal life?
Psychologically it was hard. I was never sick, now all of a sudden I felt like ‘damaged goods’, repaired, not original anymore. But after a few years, I learned to live with it.

Every 3 weeks I get 2 injections with Sandostatine LAR20. I could have settled for 1 injection with LAR30 every 2 weeks, but that meant I was feeling a patient every other weekend.

I have a busy full-time job, I try to let my disease have as little impact as possible on my daily life. In my case, this is predominantly a mental thing.

What lessons have you learned along the way (if any)?
For NET’s: go to a specialised hospital.

Be realistic. Be assertive when necessary and challenge your doctors if you are certain something is wrong.

If you are not happy with them, or with the treatment you get, change doctors or hospitals. You are the patient, it’s your body.

But also be respectful to the healthcare professionals. Most of them are absolutely great in their jobs and they care.

Who’s been your hero?  Perhaps it was you!
My family for the continuous support and as they consider this cancer as a family problem, not just mine.
My GP, for believing me something definitely was wrong and not wasting time.
My surgeon did a great job, I was back at work after a month.
My doctors, who are doing a great follow-up and are open for discussions.

Did you get any help from a patient organization during your journey?
Very much, I found fellow patients and support. I appreciated it so much that I got involved and I am now vice president of the Belgian organisation, and board member of the international organisation

How are you now?
Good. My disease is stable and when things get worse, we have a few more treatment options.
I’m trying to live my normal life.

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