Opinions

Prior to the fine result of September 28, the surgeon had already said that if it turns out to be a ‘radiologically complete response’, this is the best news. But also that the decision about the follow-up procedure will then be difficult. And that is what it turns out to be. Not difficult because we disagree, on the contrary. We are all in agreement that we will do everything we can to cure me of cancer and make me grow old happily. The problem is, neither of us can say for sure how to achieve that. It is now no longer clear whether I still have cancer cells in my body, where they are and how they intend to behave. The only thing that studies show is that the chance that the cancer will break out again somewhere, in patients like me, is quite high. It will therefore be a decision with potentially major consequences for life and death.

Fortunately, the surgeon had also said that there is no rush with this decision. We can take a month and a half. In addition, during that time I can regain my strength, which means that I can better tolerate the next treatment we choose. We use the meantime to solicit the opinions of other experts. With that knowledge, the surgeon and I can then make a decision together. Together, because he guarantees that it will ultimately be a choice that is medically justified and I that that choice suits who I am and how I want to live. I am convinced that we can do this well together.

He had already taken action immediately and had discussed the results with other specialists in my hospital. Their collective opinion was, as I described in the blog, that amputation, then radiation and then see further, seems the safest way. This is also in line with the national guidelines.

I have been involved in innovation all my working life and therefore I would like to bring in experts who are also looking outside the guidelines. But in a scientific way. That is why I have sought out top researchers with the help of my network and want to share my medical file with them. In the Netherlands we already have a flexible procedure for a Second Opinion, but not (yet) for an Innovative Research Opinion, for patients like me who like to think outside the box. I have since learned that the concept of ‘Innovative Research Opinion’ does not even exist yet, so I use the Second Opinion procedure to be invited with my file to the research institute/hospital of my choice. I hope to get in touch with the right researchers/specialists there to ask them my questions about the latest insights from the current studies. Monday, the 18th of October, I’m welcome!