roadrunner wrote:I don’t know if I would say that it’s common “to be more knowledgeable” than the doctors—in fact, I think that’s rare or at least uncommon—but is it essential to be an informed, aggressive advocate? Absolutely, and Bravo! to you for doing so here.
In that regard, don’t hesitate to raise the corticosteroid (in a firm but respectful way). If such stuff continues (or has been a pattern), I’d consider a new oncologist (if possible). These folks are very busy, and my advice is always: (1) build relationships if possible, including through positive, personal interactions with receptive physicians and staff and (2) read, research, ask as much as you can bear and understand, then filter that down to essentials and communicate timely, firmly, and respectfully.
Rock_Robster wrote:To be blunt, unless you’ve also done a 10+ year degree and residency plus specialisation training, it’s very unlikely you’re “more knowledgeable” than his doctors. Unfortunately it’s easy to fall victim to the Dunning-Kruger effect when it comes to medicine.
However, what you likely do have is a lot more time and resources available to track and investigate the minutiae and unique details of your husband’s case, including “mesearch” (ie secondary research tailored around one specific patient’s unique set of presentations and history), and to tap into a broad community of experienced patient advocates. His doctors in most systems simply have no time to do this, and are also usually bound by treatment protocols either of the hospital, the insurer, or the government (depending on the location).
This is a powerful combination however. Your oncologists‘ skills, training and access to resources - combined with your motivation, time, capacity and energy - if you can find a way to work collaboratively can be very powerful. Some doctors really enjoy working like this, others don’t - I’d suggest taking the time to find one of the former.
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