I told you already that I was angry. The realisation of the seriousness of the situation came slowly. Because you should not only give it a place, but everything you hear and experience is completely new. And that means that for a start you have to find reliable information.
Fortunately we have the Internet and although GIST is a rare disease, there are still a lot of patients worldwide. Who find each other on Facebook and the associated dedicated website (GIST Support International) as well for me recently the Dutch Contact Group GIST.
After reading the experiences of others and asking several questions it became increasingly clear that there were indeed errors in my treatment.
As those who follow this blog for some time know, in total even three.
The first was that they never told me after the first surgery that the removed tumor could return again, but also not that there were drugs that could kill any remaining tumor cells. A standard treatment in a high risk situation (as it was in my case) was three years adjuvant Gleevec, after which there was a chance that the disease would not return. Great, but for that the doctors should prescribe that drug or at least discuss this possibility with you. And that was never done.
Secondly, it appeared that a regular CT scan is the best diagnostic method to early detect GIST tumors. In fact, I actually found nowhere a case that for this purpose an ultrasound and a chest radiograph were used. And yet the doctors had decided in my case that a CT scan wasn’t necessary. And only when on the ultrasound a small deviation was observed they found out that a CT scan showed that there were already several (large) tumors present in my body. Metastases that no longer could be treated.
And finally there was the clearly visible visual indication, my bulging belly button, which indicated the presence of cancer, but that was not recognized as such by the radiological laboratory technicians at the ultrasound as well as the treating physicians. Whereby another possibility of a (timely) intervention had been lost.
After careful preparation I therefore decided to file a complaint at the regional hospital. Which has a complaints committee of which, in order to ensure the independence of this committee, the Chairman and Vice-Chairman are not connected with that hospital.
That filing of a complaint clearly need the necessary paperwork and should according to an established procedure be finalized within sixteen weeks.
So in addition, you also need a decent portion of patience, because in the end it took almost twice as long before I received a official statement.