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Standard of Care

abita's picture
abita
Posts: 1069
Joined: Dec 2017

Standard of care. Do you ever wonder how many didn't make it simply because they were at a facility that simply follows a standard, and are not allowed to deviate to help their patients?

Real Tar Heel
Posts: 253
Joined: Nov 2019

Well I wonder about the actual standard, not that the docs aren't allowed to help people because of restrictions. I know at my hospital they discuss my treatment at the tumor board and there is debate that they tell me about so I can make decisions. So then, if the board is made up of docs who are, let's say, skeptical of radical surgery, maybe that isn't an option at that place because there is no one to recommend it. There seems to be an institutional mindset in some departments, probably like there are at law firms. Like after I kept hearing about HAI pump, I asked the surgical onc and he said "we don't do that here," He wasn't dismissive, it was just a statement.

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

In my opinion SOC only protects/benefits the dr.  We have to advocate for ourselves.  We are n=1, not a pool of ducks. It's high time for medicine to come up to date and personalize per patient.  As of now, we patients have to hunt for ourselves the best treatments outside SOC.  Really sad to me.

OnTheRoad
Posts: 29
Joined: Jul 2018

I agree with all comments above. Unfortunately in some places there are some "standards" that might not include a treatment that can save a life - or that can improve drastically the quality of life for some of us. 

I am with SnapDragon2 that we need to advocate for ourselves. We also need to do some research and discuss what other options we have.

As a final statement: I deeply believe there are doctors and there are doctors. Some of them excel in their area, have an open mind and are up to date with the last development of treatments and surgeries. Other doctors look interested only on doing their daily job - and sometimes poorly. If we want to have a better chance, we need to look for the best doctors and not accept the first ones we have contact with.

tanstaafl's picture
tanstaafl
Posts: 1302
Joined: Oct 2010

You may have to break steps into tasks, one provider per task, MC, DO, PA, NP, RN, ND etc. 

Spmetimes you may need to tell them what they want to hear or a close approximation.

One task might use a PA for celecoxib or maybe even Xeloda in rural areas, RN for IVC etc.

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

Yes, what tanstaafl said.

I have 5 to 6 drs I use to get everything I need.

Tom M.
Posts: 212
Joined: May 2019

In the end we are our own caregivers. I questioned about my next move and I got the ball rolling. Having a son in law that has a Phd is handy. He defines all the medical terms for me and knows just where to go to research treatments. 

abita's picture
abita
Posts: 1069
Joined: Dec 2017

yeah, I guess I was just stupid then to believe my doctor's were trying to do everything to help me

SnapDragon2's picture
SnapDragon2
Posts: 582
Joined: Nov 2019

No, there is suppose to be a level of trust.  Thing is help only goes so far then you have to hit the road and find another specialist to help you because your current dr/center has exhausted all resources they can provide.  You have reached that point where you are searching out a dr's willingness to remove the lung mets while liver mets are undetectable.  Smart move girl!

 

DanNH's picture
DanNH
Posts: 155
Joined: Feb 2021

Six months in to this I have learned that doctors are often masters in their area of operation or their standar of care. Once you get outside of their area they just don't know what else is available. I guess it all has to do with comfort zone which we all feel most at ease in. We have to go outside of our own comfort zones to find other treatments and options. Or we can stay where we are and get the best our doctors have to offer, within their own treatment zone.

We can all use a little of SnapDragon's determion, drive, and control of her own treatment! 

Dan

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