I’m not exactly in this position, but I think it is somewhat adjacent. I have stage 4 prostate cancer and after initial treatment (chemo + castration) decided to stop seeing my urologist for periodic checkups. I do regularly get my blood tested by a lab outside of our (European) healthcare system.
This was not exactly due to the establishment being “wrong”, but a combination of factors:
Quality of care wasn’t great and I can’t stand the paternalistic nature of healthcare (in my country).
After five months of pretty intensive self study and an occasional question to my doctor I felt that I had a sufficient understanding to improve my treatment beyond “standard of care”. It probably helps a bit that my brother is a doctor.
Three and a half years after diagnosis I’m doing better than expected, but of course there is no way to tell if this is due to luck or my own treatment.
At first I was a bit frustrated that none of my doctors seem to care, but I understand that they’ve been thoroughly trained to ignore anecdotes (and they’re probably also overworked).
I feel it important to mention that I’m not into alternative medicine. I got my GP to prescribe off label medication and the rest is just lifestyle adjustments (diet and exercise).
Firstly, I am very sorry for what you are going through.
As a training surgeon, I would admit that I’d have a similar approach to yourself. Of my colleagues, I’d only say one in four are particularly ‘conscious’ thinkers despite being intelligent. Many work on auto-pilot in line with guidelines, which is the safest legal position and requires less effort in terms of decision-making. It also alleviates the need for people to read and study the evidence base in detail. Whether through laziness, being over-worked or feeling legally vulnerable, individual patient factors are under-emphasised in favour of following the algorithm.
I would advocate for 1) shopping for a physician who appears to exercise professional autonomy; 2) empowering yourself by reading; 3) if you want to go off-protocol, bring the evidence to an appointment so your physician can make themselves aware; 4) making your personal priorities clear both verbally and in documentation, i.e. advanced decision directives. I am not saying the doctors or guidelines are wrong, but they are standardised and generalised in a manner that gives 80% optimal care to 80% of people, roughly speaking
I’m not exactly in this position, but I think it is somewhat adjacent. I have stage 4 prostate cancer and after initial treatment (chemo + castration) decided to stop seeing my urologist for periodic checkups. I do regularly get my blood tested by a lab outside of our (European) healthcare system.
This was not exactly due to the establishment being “wrong”, but a combination of factors:
Quality of care wasn’t great and I can’t stand the paternalistic nature of healthcare (in my country).
After five months of pretty intensive self study and an occasional question to my doctor I felt that I had a sufficient understanding to improve my treatment beyond “standard of care”. It probably helps a bit that my brother is a doctor.
Three and a half years after diagnosis I’m doing better than expected, but of course there is no way to tell if this is due to luck or my own treatment.
At first I was a bit frustrated that none of my doctors seem to care, but I understand that they’ve been thoroughly trained to ignore anecdotes (and they’re probably also overworked).
I feel it important to mention that I’m not into alternative medicine. I got my GP to prescribe off label medication and the rest is just lifestyle adjustments (diet and exercise).
Feel free to ask me questions.
Firstly, I am very sorry for what you are going through.
As a training surgeon, I would admit that I’d have a similar approach to yourself. Of my colleagues, I’d only say one in four are particularly ‘conscious’ thinkers despite being intelligent. Many work on auto-pilot in line with guidelines, which is the safest legal position and requires less effort in terms of decision-making. It also alleviates the need for people to read and study the evidence base in detail. Whether through laziness, being over-worked or feeling legally vulnerable, individual patient factors are under-emphasised in favour of following the algorithm.
I would advocate for 1) shopping for a physician who appears to exercise professional autonomy; 2) empowering yourself by reading; 3) if you want to go off-protocol, bring the evidence to an appointment so your physician can make themselves aware; 4) making your personal priorities clear both verbally and in documentation, i.e. advanced decision directives. I am not saying the doctors or guidelines are wrong, but they are standardised and generalised in a manner that gives 80% optimal care to 80% of people, roughly speaking
I’d be interested in a post on “how to shop for a physician” if you want to write more about it.
I wish you recover soon with all my heart