It took us a while until we reached the “right” doctor. We met several doctors until we found the one that best fitted Israel.
The first doctor we met, was knowledgeable and had a good reputation. Before meeting him I was already digging the internet for solutions. At the time, there were several drugs in development, a fantastic fact by itself, as we are talking about a pretty rare lung-cancer mutation.
The doc knew about a few of the drugs, but not all, as they were in the very initial stages of clinical trials. He was surprised yet curious to hear of them. To us, it was a red light, as supposably we are not the ones who should have the knowledge. I know, it is the Internet, medicine has changed and all that, yet it made us feel uncomfortable, the fact that we had to find out this information ourselves.
Afterwards we attended another doctor, who was very nice and welcoming. We sat at his office, and among other things, there was a picture of his family on the table. Young lovely kids. In any other circumstances, I would think to myself, great family man. Nice. But then I thought that he probably doesn’t have so much free time to investigate Israel’s specific case, and we probably need to think of alternatives. I know, I know, it is not politically correct, but we are talking about my husband’s life, and thais is what matters.
So, we asked him about a specific clinical trial, which was taking place in a nearby hospital. This info was easily retrieved from https://clinicaltrials.gov/. Apparently, the trial hasn’t started yet, so he had to check with a colleague working in this nearby hospital.
I know that the medical system is distributed, no unified database, etc., yet I found it a bit bizarre, the lack of shared knowledge, and the fact that I had to tell the doc of this nearby planned trial. In other words, the decentralization of health systems and records, the accelerating knowledge gap between things that are developed in pharma labs and the “real life”, emphasize the fact that patients and caregivers need to be “en garde”.
Finally, we reached the doctor who was the best match: he was very knowledgeable in general and specifically about the Exon20 mutation. He was smiling and relaxing, very curious to explore new horizons, brave, updated on state-of-the-art technologies, and had a very good sense of humor.
He also said something very important after seeing a letter from one of the former doctors, who wrote: “I explained to the patient that there is no cure to his disease”. His reaction was: “Why did he say that? It is not modest nor humble. Solutions are popping up each day, so no one knows what will be tomorrow. Maybe a new treatment will save more people?” And he was right. Several treatments were offered in the following months. His optimistic view was refreshing and brought some hope.
So, I guess it is an important lesson. Continue to search for your best-fit doctor and don’t give up until you find one. After all, It is a match between people, and even here, you can always swipe to the left.