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Switch to Forum Live View Downside of Going Pink
4 years ago  ::  Oct 03, 2010 - 11:22AM #21
Weepingangelofthetrees
Posts: 2,053

Oct 2, 2010 -- 10:03PM, appy20 wrote:


What does self-advocacy have to do with this?  What exactly are you supposed to advocate?   If this problem is widespread throughout the medical community, where are you going to go?  Most people don't have the medical knowledge to truly question their doctor's decisions.  It seems to me that the medical community needs to get its act together and not put the burden on the patient to have to go search for the correct doctor especially when they may have absolutely no idea of who they should go to.


What exactly should yourself be advocating?


 


 



Your survival, facing a life threatening cancer.


When my parents were diagnosed, they followed orders. They took every treatment the doctors prescribed, suffered horribly the side effects, and left this world quite out of their mind in a liquid morphine semi-conscious state, because the pain was so great they couldn't have bore being without the gradual increase in narcotic pain killers that cradled them to the final moment. What a relief. They'd suffered every treatment prescribed, so that they could suffer a little longer with the incurable.

Very often people are intimidated by their Doctors. That white coat of knowledge, having attended years and years of university instruction, having a practice that's flourishing for decades, stands before the patient and makes the diagnosis that will change your life forever; you have cancer.
The fear that washes over a person must feel like they'd just dove head first into the chill waters of the Atlantic. Suddenly, everything that one always thought they had time for, suddenly has a time limit.

It's your life, they're dealing with. And as Irene said, if you don't fight for yourself, if you don't ask the questions you have about the treatments being done to you, who will?
Very often Doctors are so busy, we become but another file on their desk when it's our turn for the appointment. It's a huge responsibility for medical professionals to take someone's life in their hands. Futures depend on what happens next. Families and friends hold their collective breaths, everything will turn out OK, and they'll have their loved one with them for years to come, after this one hurdle is overcome.

Some patients let the Doctors advice control everything. They figure, the Doctor is the one that was trained to know what she/he is doing, and so it's all a matter of trust and release. Following orders, hoping for the best.

Unfortunately, the best isn't good enough. And when someone puts their life in someone elses hands, it stands to reason that trust wouldn't be afforded in just superficial impressions. It's a Doctor, they know what they're doing. This is their specialty, they know what I should have done. They pay huge sums in malpractice insurance, that'll keep 'em straight, I can trust them.

People very often take more time in buying a new or used car, and checking it out, than they do the Physician who's orders can effect the rest of that patients life, forever. If you're going to go through it, it's wise to know what it means before taking the first step on that journey. Because once you start cancer treatments, the person you were at the outset, is gone forever. You never return back to who you were, after Chemotherapy, after radiation, after surgery to remove something. You suffer so much, endure so much, how can you ever be who you were before all that was done to you, while said to be happening in your best interest?

How to Check a Doctor's Record


 


Cancer Active


 


how to research on your own cancer treatments prescribed


 


"Becoming a Proactive Cancer Patient" (Breast Cancer)


(**Keyword search just "the above term" on Google, for a wide range of proactive article/resource links**)


 


It's your life. You were in control of it before that Doctor appointment that promises to alter your destiny forever. Why would you lose control, when now you've been diagnosed as having to fight to survive your self, against one of the greatest odds and the most prolific killers on earth?  



"Remember, Jesus would rather constantly shame gays than let orphans have a family."
Stephen Colbert
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4 years ago  ::  Oct 03, 2010 - 11:47AM #22
appy20
Posts: 10,165

Once again, you miss the point.  The pink movement is about self-advocacy. It consists of advocates for breast cancer and they are blamed for the problem of overzealousness.  We are not talking about bad individual doctors.  We are talking about a problem with protocol.  A protocol that was pushed by these self-advocacy movements.  We are talking about a problem in the medical profession itself that in part got led by patient advocacy groups. Yes, the pharmaceutical companies did push some of this but many doctors were outshouted by these advocacy groups. 


We have a problem with overzealousness.  There may be in your state, only doctor that rejects this protocol.  So, if have a cancer, who do you go to?  Not everyone can travel.  If there is a problem, to  travel repeatedly is not an option.


You and Irene are taking this "let them eat cake" approach. Not everyone is capable of understanding biology well enough to know what cancers you can live with and what ones you can't.  Not everyone has a local doctor that rejects protocol. In the case of my friend, there is not one doctor who would have questioned her treatment.  I don't know for sure that she was not treated correctly because all I know is what I read on a brief internet search.  Her treatment was considered good with her advocacy group.  But. What if it was not. 


You and Irene may know more than all the oncologists in your area but I can't say that I know more than my doctors.  I may be able to tell if something is way off or if I just get aggravated enough that I would like to find other options.  That doesn't mean that I am entirely capable of knowing the latest and the greatest about every cancer cell.  Her doctors were not quacks.  She may have gotten the best treatment.  Even if she had questioned it, where would she have gone for answers?  Not anywhere local.  They all treat that same cancer as life-threatening. It may be. 


It is not a simple matter that all patients know best. I work with the general public who all feel they are qualified to second guess their doctors. I don't believe they are qualified. 


I also do not have great failth in alternative health care.

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4 years ago  ::  Oct 03, 2010 - 12:34PM #23
Weepingangelofthetrees
Posts: 2,053

Oct 3, 2010 -- 11:47AM, appy20 wrote:


Once again, you miss the point. 


I didn't miss anything.


You on the other hand, aren't even on the same page. So let me be clear, because quite frankly I'm sick and tired of members here who can't read what someone says in simple English, so that their complete misunderstanding causes them to rant about how that person they can't understand missed the point they themselves couldn't even comprehend, so that they interjected their own ideas into the statement and then attacked those, by claiming the other person is responsible for writing them!




Lets see if you can read this!


NO ONE IN THIS THREAD HAS EVER SAID THEY KNOW MORE THAN A DOCTOR!


MY POINT IS, IF YOU ARE GOING TO BE TREATED FOR CANCER, LEARN WHAT YOU'RE IN FOR! STARTING WITH RESEARCHING YOUR DOCTOR(S) WHO ARE GOING TO BE TREATING YOU! FIND OUT WHAT YOUR CANCER IS AND THE TREATMENTS THAT ARE AVAILABLE. RESEARCH WHAT THE DOCTOR IS PRESCRIBING SO THAT YOU KNOW EVERYTHING THAT YOUR ABOUT TO COMMIT YOUR BODY TO!


IT'S A SIMPLE MATTER THAT THE PATIENT IS THE ONE THAT'S PAYING THE DOCTOR FOR THE SUFFERING AND THE PAIN, THE OPERATION, THE REMOVAL OF ORGANS, TISSUE, ETC... THAT'S GOING TO OCCUR WHEN THEY COMMIT THEIR BODIES TO THAT DOCTORS CARE!


So don't post the misinformation , the lie,  that says no one gets the point, when no one here is saying they know more than a doctor! But is instead advocating repeatedly, even though you simply cant read that, that the best patient is the informed patient. Because the patient is the one that's going THROUGH THE TREATMENT, while the Doctor is simply administering the treatment.


And while I don't know how it works in your country, in America PATIENT ADVOCACY ISN'T A BAD WORD!
Get it now!? Was I clear? Can you READ ME NOW?
 


DO YOU GET THE POINT?


MEMBERS, DON'T EVER LET SOMEONE INFLUENCE YOU TO THINKING YOU DON'T KNOW ANYTHING ABOUT YOUR RIGHT TO KNOW WHAT YOU ARE ABOUT TO UNDERGO IN CANCER TREATMENT. DON'T EVER LET ANYONE INTIMIDATE YOU INTO THINKING YOU AREN'T QUALIFIED TO EDUCATE YOURSELF ABOUT WHAT CANCER TREATMENTS YOU'RE ABOUT TO UNDERTAKE, WHEN IT'S YOUR BODY THAT IS GOING TO SUFFER ALL OF IT.

AND NO MATTER WHAT, DON'T EVER BE INTIMIDATED BY SOMEONE IN A WHITE COAT WITH DOCTOR TO THEIR NAME. IF YOU DON'T LIKE WHAT YOU ARE HEARING, OR YOU GET A WEIRD FEELING ABOUT THAT DOCTOR'S ADVICE, GO WITH THAT AND SEEK ANOTHER OPINION. BECAUSE ONCE YOU ARE DEAD, IT'S TOO LATE TO THINK TWICE !


YOU ARE WORTH PROTECTING YOURSELF! AND DON'T EVER LET ANYONE TELL YOU OTHERWISE.

Moderated by Merope on Oct 06, 2010 - 01:02AM

"Remember, Jesus would rather constantly shame gays than let orphans have a family."
Stephen Colbert
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4 years ago  ::  Oct 03, 2010 - 12:47PM #24
appy20
Posts: 10,165

So, how is that relevant to the influence of the Pink Movement?  How is that relevant to the protocol of self-examinations and mammograms?  How is one to know if the cancer one has is being overtreated if one has not been to medical school?  How is one to find a doctor that doesn't follow the standard protocol?  Can you trust any doctor just because they don't follow the protocol? 


This thread is not about patient ignorance. I am not saying that patients should not be informed.  I have never said patients should not fight for themselves.  My friend was very active in one of these groups that had lots of events supporting this pink movement. 


So, far only UR2 is the only one that seemed to get what this thread was about.  You and Irene were on entirely different tangents.


 

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4 years ago  ::  Oct 03, 2010 - 1:18PM #25
appy20
Posts: 10,165

Irene,


Make no mistake. I am not opposed to tangents.  Far be it. However, let the topic at least get some discussion before a tangent.  Then let the tangents begin.....


Maybe I didn't post it the topic very clearly.

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4 years ago  ::  Oct 03, 2010 - 1:28PM #26
Weepingangelofthetrees
Posts: 2,053

Oct 3, 2010 -- 12:47PM, appy20 wrote:


So, how is that relevant to the influence of the Pink Movement?  How is that relevant to the protocol of self-examinations and mammograms?


 



I have absolutely no doubt, you don't know the answer to that. And you never will.


You have my deepest sympathy.


"Remember, Jesus would rather constantly shame gays than let orphans have a family."
Stephen Colbert
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4 years ago  ::  Oct 03, 2010 - 9:45PM #27
solfeggio
Posts: 8,529

Jane -


Just to set the record straight, it was I who enquired about your husband and expressed my sympathy - and not appy.

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4 years ago  ::  Oct 04, 2010 - 12:06AM #28
jane2
Posts: 14,288

Oct 3, 2010 -- 9:45PM, solfeggio wrote:


Jane -


Just to set the record straight, it was I who enquired about your husband and expressed my sympathy - and not appy.




Thank you, solf


I appreciated it. And I have amended my posts.

discuss catholicism
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4 years ago  ::  Oct 04, 2010 - 12:33AM #29
jane2
Posts: 14,288

Oct 3, 2010 -- 10:34AM, appy20 wrote:


Jane,


I have only met my deductible once in my life, therefore, my insurance does not ever pay for me.  Even when I do meet my deductible, the insurance company says it won't pay for this or that and I still have the deductible plus 15%.  I pay $400 a month for insurance and can go broke very easily. 




That is an outrage. My Medicare B is about $95. a month. I also have BC/BS Federal Employees plan which pays for most of my meds : most are cheap generics.


What can we all do to bring this under control?

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4 years ago  ::  Oct 04, 2010 - 10:08AM #30
appy20
Posts: 10,165

Oct 4, 2010 -- 12:33AM, jane2 wrote:


Oct 3, 2010 -- 10:34AM, appy20 wrote:


Jane,


I have only met my deductible once in my life, therefore, my insurance does not ever pay for me.  Even when I do meet my deductible, the insurance company says it won't pay for this or that and I still have the deductible plus 15%.  I pay $400 a month for insurance and can go broke very easily. 




That is an outrage. My Medicare B is about $95. a month. I also have BC/BS Federal Employees plan which pays for most of my meds : most are cheap generics.


What can we all do to bring this under control?




 You have what my mother has and she never has to pay a dime. I keep saying I don't want something for nothing. I am willing to pay twice as much for assurance that I won't lose everything should I get sick.  As it stands now, you can't get independent coverage on existing conditions (my lungs, my psych history).  BTW, I have paid every cent out of my own pocket for all the psych treatment since I was 18. Insurance has not paid a dime.  


People who think their insurance covers everything has never had to use it.  Then they can find out differently.  People who block government public option have not done a thing to create a workable private option either.

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