I’m not a person who complains about any futility that goes wrong. It takes a lot of energy and the misery is already behind you. Usually you can make better use of your time. But when it comes to your health and even your life then the situation is different. And that’s the reason why I filed three complaints at the regional hospital.
The first complaint was “that after surgery in 2010 they had not started a preventive treatment with Gleevec and the possibility of this treatment was also not discussed with me”.
I brought up that the doctors in the Radboud UMC had told me afterwards that with a preventive treatment with Gleevec, usually for a three-year period, there was a good chance that remaining tumor cells would be sufficiently killed. This treatment was however not applied and the treatment option was never discussed with me.
According to the doctors of the regional hospital this was however discussed in the regional oncological meeting and they had concluded that preventive treatment was not indicated and that only a further follow-up was necessary. And that I thereby was treated according to protocol.
At the time of that advice was, according to them only demonstrated that the disease-free survival was prolonged by this therapy, but that there was no survival benefit demonstrated. That was proved only later from a Scandinavian study in 2011.
In short, the doctors hide themselves behind a regional oncological meeting that would have taken place after the operation (a report of the meeting is however to date still not received).
I responded to this reaction that I deduced from the documents that in 2010 was already spoken about the possibilities of adjuvant Gleevec, but that this was never communicated with me. As well as information about the nature of the GIST tumor and the risk of metastasis. Afterwards I had to hear from others that my case was a high risk situation.
If they had me fully and clearly informed after the operation, I surely would have sought a second opinion. This opportunity was now deprived to me. Moreover, I was wondering now whether the doctors at the local hospital did have enough experience with GIST and I therefore had received the best possible medical treatment and aftercare.
The complaints committee stated that according to a directive of 2011 it was advised to treat patients with GIST tumor and a chance of more than 50% of metastases with adjuvant Gleevec. And that this indication in 2010 did not exist.
But also that there was in my case a high risk situation because of the size of the tumor and the spill during the operation and that the doctors should therefore have responded more actively when the directive was amended. And in any case treatment with Gleevec should have been discussed with me.
My complaint was in that regard therefore regarded as well founded, and with that a first important step had been taken.