Proton therapy

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"The bravest are surely those who have the clearest vision of what is before them, glory and danger alike, and yet notwithstanding, go out to meet it." - Thucydides

Over two weeks after the conversation with the radiation doctor at the LUMC, I finally receive a call that the calculation of the proton radiation has been received. And it turns out that there is a considerable advantage in proton radiation for me. At first I am not sure whether I am really happy with this. Of course, the chance of side effects is smaller, but it also says something about the sensitivity of the area to be radiated.
On Tuesday 9 June I have an appointment at Holland PTC, the proton center in Delft. Initially we have a conversation with a nurse. She poses a number of general questions and we discuss participation in scientific research. Proton therapy in the Netherlands is still in a research phase. The benefits have already been demonstrated abroad, but they also want to do research in the Netherlands. I would like to participate in this study, which means that I have to fill in a questionnaire a number of times and that they can use my treatment data for the study.

Then we have a conversation with the radiation doctor. At first he wants to hear my side of the story, how was the tumor discovered, how did I experience everything, etc. Then he shows the two calculations. Colors indicate which areas will be radiated and to what extent. It can be clearly seen that the proton radiation will hit a smaller area and the esophagus in particular is more spared. This reduces the chance of side effects.
He also indicates that there are some drawbacks of proton therapy to photons. The duration of the session is longer because a number of extra photos have to be taken. This means 20 to 30 minutes per session as opposed to 10 to 15 minutes with photon radiation.
Furthermore, the equipment is somewhat more susceptible to malfunction. It is still quite new and more importantly they only have 1 device while they have 5 radiation devices in Leiden. So there is a greater chance that a session has to be postponed once. This has happened 4 times in the 1.5 years that they have been operating. These are no obstacles for me, especially now that I have seen the differences in the calculations.

For this radiation, there is always consultation between the radiation physicians from the LUMC, Erasmus and Holland PTC. In that consultation, they decided that the total will be 33 radiation sessions. 3 more than would have been in the LUMC.
We also discuss the side effects, which correspond to what we heard at the LUMC. The only difference is that this doctor is slightly more clear about the pain complaints in the esophagus during the radiotherapy. Where there have been earlier talks about severe choking complaints, this doctor clearly indicates that it is likely that I will get pain when swallowing, that I will have to switch to liquid food and that the chance that I will get tube feeding is certainly not excluded. I am shocked by this, especially when I get home later I notice that this scares me. You don't get tube feeding for nothing, then the pain is serious. But even now we are going to put our shoulders under it, I will not let myself get under it.

After the conversation with the doctor, a mask should be made. They cannot use the mask they made in the LUMC. Before they get started with this, I ask if a tattoo point should be put on again. They have done this in the LUMC to ensure that the radiation session is the exactly the same. I hate the point so much that I don't like to have another one. Although T. said to me in advance: well then you just ask if they put a line under it then you have a smiley :)
The mask is made from a plastic sheet that they heat. This makes it soft and it stretches after which they put it over my face and shoulders. Then they push it into shape so that it fits nicely on my face. I don't even mind making the mask, it just feels like a facial with warm cloths ;-)
Once cured and cold, the mask is less comfortable, but it is not intended for that. When the mask is ready, there is one more thing on the program, a CT scan. When that is done we can finally go home after 3 hours. Now I have to wait for the radiation calculations to be completed and I can start with the radiations.



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