Complaint Thursdays

[Randall Flagg]

Holy *****. 

I don't know a lot about this stuff yet (a blessing), but chemo HAS to significantly alter your chances of being sick at some point in the future, in addition to how awful that time must have been already. 

[dudacek]

That leaves me speechless. Can’t think of any other situations where the words “you don’t have cancer” could sound worse.

[LTS]

2 hours ago, josie said:

I got the most infuriating good news yesterday.

 

A friend of mine was diagnosed with stage 4 of a rare form of ovarian cancer around early Spring this year. It had been 9 years since she'd been to a gyno, and ovarian cancer is "the whisper killer" since it's hard to detect, and she went through utter hell. 6 months of chemo. All the hell associated- her children, loved ones- all preparing for what we assumed was the inevitable. 

She finished chemo October 2nd, and 2 days later had an appointment with the leading specialist in this type of cancer in the US/world in Houston. He sits her down and calmly explains that... U of R had misread her biopsies. Multiple times. 

She never actually had cancer. She had benign growths. They can become cancerous- she will be seeing this doctor every 6 months to ensure they're not becoming serous- but they never were. At no point did she actually need to go through the chemo. The fear. The absolute utter hell that has torn her world apart. 

 

I just have no words. Second opinions. I guess I'll never let my anxiety get in the way of asking for one. 

I sincerely hope she finds a good lawyer.  After going through all of that, she should be entitled to living comfortably for a quite some time.  Unfortunately it happens.

[Sabres Fan in NS]

2 hours ago, josie said:

I got the most infuriating good news yesterday.

 

A friend of mine was diagnosed with stage 4 of a rare form of ovarian cancer around early Spring this year. It had been 9 years since she'd been to a gyno, and ovarian cancer is "the whisper killer" since it's hard to detect, and she went through utter hell. 6 months of chemo. All the hell associated- her children, loved ones- all preparing for what we assumed was the inevitable. 

She finished chemo October 2nd, and 2 days later had an appointment with the leading specialist in this type of cancer in the US/world in Houston. He sits her down and calmly explains that... U of R had misread her biopsies. Multiple times. 

She never actually had cancer. She had benign growths. They can become cancerous- she will be seeing this doctor every 6 months to ensure they're not becoming serous- but they never were. At no point did she actually need to go through the chemo. The fear. The absolute utter hell that has torn her world apart. 

 

I just have no words. Second opinions. I guess I'll never let my anxiety get in the way of asking for one. 

Glad that it's not cancer, but what in the hell.

A pretty good friend of our had cancer and actually beat it, but the chemo treatment was so bad that it actually ended up killing her in the end.  She got the news that the cancer was not showing up in any tests, but she never left the hospital.  The cancer treatments have not advanced much at all in the last 30+ years.  It's actually a huge $ maker for big pharma.  Shameful.

[josie]

37 minutes ago, New Scotland (NS) said:

Glad that it's not cancer, but what in the hell.

A pretty good friend of our had cancer and actually beat it, but the chemo treatment was so bad that it actually ended up killing her in the end.  She got the news that the cancer was not showing up in any tests, but she never left the hospital.  The cancer treatments have not advanced much at all in the last 30+ years.  It's actually a huge $ maker for big pharma.  Shameful.

Chemo is horrific.

I've always had nothing but hope and respect for oncology- it saved my sister's life, and that of many others I know and hopefully all others to come. However, on her post on social media, a startling number of women came forward with similar stories. I say women because ovarian cancer seems to have more of a "is it isn't it" difficulty in diagnosis. There appears to be a "salt the earth and ask questions later" approach to this particular family of illness- I get it, it can metastasize quickly and be fatal, and it has a very high reoccurrence rate. But when half a dozen women share their experiences of "I went through x rounds of chemo and surgery when it turns out I really didn't have to" you have to wonder.

Ovarian is one of the more terrifying cancers in my opinion- and I know it's greatly affected many people in this community. To add this to that diagnosis is just... what do you even do? What if you can't afford a second opinion? Hell, she couldn't really afford treatment as it was (yet another gofundme we're all helping with). 

I really want to believe the best, that it was an honest but horrible mistake, a series of failures not unlike the highly unlikely sequence of events that leads to a plane crash, but my god it's confidence shattering. You can't help but question/be cynical.

She's a hell of a fighter- she'll go to war over this with a lawyer whose armor she trusts. 

Edited October 10, 2019 by josie

[shrader]

54 minutes ago, josie said:

Chemo is horrific.

I've always had nothing but hope and respect for oncology- it saved my sister's life, and that of many others I know and hopefully all others to come. However, on her post on social media, a startling number of women came forward with similar stories. I say women because ovarian cancer seems to have more of a "is it isn't it" difficulty in diagnosis. There appears to be a "salt the earth and ask questions later" approach to this particular family of illness- I get it, it can metastasize quickly and be fatal, and it has a very high reoccurrence rate. But when half a dozen women share their experiences of "I went through x rounds of chemo and surgery when it turns out I really didn't have to" you have to wonder.

Ovarian is one of the more terrifying cancers in my opinion- and I know it's greatly affected many people in this community. To add this to that diagnosis is just... what do you even do? What if you can't afford a second opinion? Hell, she couldn't really afford treatment as it was (yet another gofundme we're all helping with). 

I really want to believe the best, that it was an honest but horrible mistake, a series of failures not unlike the highly unlikely sequence of events that leads to a plane crash, but my god it's confidence shattering. You can't help but question/be cynical.

She's a hell of a fighter- she'll go to war over this with a lawyer whose armor she trusts. 

Is a half a dozen really that high of a number though?  These things are always going to happen and I really have no sense for whether or not that's a higher than normal rate especially since looking through responses on social media isn't exactly the most reliable of sources.  People misrepresent themselves, others misunderstand what their doctor tells them.  It's really tough to get a good feel from that.

If this is something that is fairly common practice, a big question mark there, it makes me wonder if that legal pursuit could ultimately be worth it.  From your posts, it sounds like resources are already limited, is it worth pursuing that given the chance of no results?  Fortunately your friend has been given the time to let the dust settle a bit on this one, time to sit back and assess which option is best going forward.

[darksabre]

13 minutes ago, shrader said:

Is a half a dozen really that high of a number though?  These things are always going to happen and I really have no sense for whether or not that's a higher than normal rate especially since looking through responses on social media isn't exactly the most reliable of sources.  People misrepresent themselves, others misunderstand what their doctor tells them.  It's really tough to get a good feel from that.

If this is something that is fairly common practice, a big question mark there, it makes me wonder if that legal pursuit could ultimately be worth it.  From your posts, it sounds like resources are already limited, is it worth pursuing that given the chance of no results?  Fortunately your friend has been given the time to let the dust settle a bit on this one, time to sit back and assess which option is best going forward.

I think the thing to keep in mind here is that women are much more likely to be victims of malpractice, and that women are also much more likely to blame themselves for the harm that comes to them than the people who do the harm. So it's distinctly possible that not only is there a large number of women who are being treated for no reason, but there is probably also a large number of women who don't think it's worth it to call this malpractice out.

The cynic in me, who sees the predatory nature of this country's healthcare/pharmaceutical industry, would not be surprised at all to find out that women with this kind of "maybe it's cancer" are being targeted for unnecessary treatment because it's easy to victimize them.

 

[josie]

12 minutes ago, darksabre said:

I think the thing to keep in mind here is that women are much more likely to be victims of malpractice, and that women are also much more likely to blame themselves for the harm that comes to them than the people who do the harm. So it's distinctly possible that not only is there a large number of women who are being treated for no reason, but there is probably also a large number of women who don't think it's worth it to call this malpractice out.

The cynic in me, who sees the predatory nature of this country's healthcare/pharmaceutical industry, would not be surprised at all to find out that women with this kind of "maybe it's cancer" are being targeted for unnecessary treatment because it's easy to victimize them.

 

Yeah I didn't want to get into that angle on this board, even though it is a big part of how I feel about it. Typed it out a few times, deleted it. Been through enough of it myself to know the bias is real, but if you haven't experienced it I doubt it sounds believable and we're all borderline hysterical bored housewives getting all hyped up off each other's misfortune. 

I don't know man, 6 separate women in the Rochester area who met in chemo and all found out they actually weren't ill with cancer is a pretty scary high number. I guess if that's normal that's... really disturbing. Their stories all had differences of course but the overlying reality was the same- they were diagnosed, sent straight to chemo, and only found out the results were not that serious much later. My friend's is by far the most egregious example of this, but god.. that's just so wrong. 

 

sorry for snapping, i'm just angry.  I guess they're just busy. Human bodies are weird. 

Edited October 10, 2019 by josie

[Sabres Fan in NS]

My apologies for my rant concerning big pharma wanting to keep cancer going and conventional treatments going to make big $ to anyone here fighting this terrible disease.

I know that @North Buffalo is fighting it now and @Eleven lost his soul mate to this terrible disease.  So, I understand that you have to fight it with every means available. 

[Brawndo]

1 hour ago, josie said:

Yeah I didn't want to get into that angle on this board, even though it is a big part of how I feel about it. Typed it out a few times, deleted it. Been through enough of it myself to know the bias is real, but if you haven't experienced it I doubt it sounds believable and we're all borderline hysterical bored housewives getting all hyped up off each other's misfortune. 

I don't know man, 6 separate women in the Rochester area who met in chemo and all found out they actually weren't ill with cancer is a pretty scary high number. I guess if that's normal that's... really disturbing. Their stories all had differences of course but the overlying reality was the same- they were diagnosed, sent straight to chemo, and only found out the results were not that serious much later. My friend's is by far the most egregious example of this, but god.. that's just so wrong. 

 

sorry for snapping, i'm just angry.  I guess they're just busy. Human bodies are weird. 

Women and persons of color unfortunately are more at risk to receive lower quality healthcare in the US Today.  It’s a combination of access limitations, and Preconceived biases on the part of some healthcare providers. 
 

One of the potential issues facing those six is the longer term effects that could be caused by the chemotherapy. There is an increased  risk for developing other forms of cancer, such as lymphoma later in life. Heart, liver and lung complications are another possibility. 
 

I do wonder if it was the same pathologist and if they were over reading the slides and/or the oncologist being overzealous.  I shutter to think that they maybe were involved in a kickback scheme with a pharmaceutical company. 
 

In any case it was malpractice and your friend should pursue all avenues available to her and her family. 

[#freejame]

1 hour ago, darksabre said:

I think the thing to keep in mind here is that women are much more likely to be victims of malpractice, and that women are also much more likely to blame themselves for the harm that comes to them than the people who do the harm. So it's distinctly possible that not only is there a large number of women who are being treated for no reason, but there is probably also a large number of women who don't think it's worth it to call this malpractice out.

The cynic in me, who sees the predatory nature of this country's healthcare/pharmaceutical industry, would not be surprised at all to find out that women with this kind of "maybe it's cancer" are being targeted for unnecessary treatment because it's easy to victimize them.

 

Honest question: don’t women go to the doctors at much higher rates than men? Would this not contribute to at more misdiagnoses? Do women have higher rates of early detection of cancer or higher rates of any detection whatsoever? 

Not sure if anyone has those answer, but I’m curious if so. 

[Sabel79]

I posted almost a year ago about my GF’s health scare, that sent me on a tear-ass 400 mile drive to be by her side.  The C-word was tossed about a lot before they admitted her to have a biopsy on the morning.  When I spoke to the surgeon afterward he was almost annoyed, she was fine, no idea why she got referred over.  

The mid-levels sent to her upon discharge evidently didn’t get the message, they re-upped on the initial potential diagnosis.  Had I not been there,  might have been ugly.  As it was, some harsh words were spoken, at ever increasing volume, until crow was eaten on their end.  Was terrifying for her and near Hulk-inducing for me. 

Our health care system is a disaster.  

[SwampD]

 

Halloween has jumped the shark.

 

 

 

Oh, and my sister is still at Roswell after her second round of chemo and everyone related to me in the 716 has the flu and can't help out and I'm feeling guilty.

 

But man, the new decorations are just awful. 

[josie]

43 minutes ago, SwampD said:

 

Halloween has jumped the shark.

 

 

 

Oh, and my sister is still at Roswell after her second round of chemo and everyone related to me in the 716 has the flu and can't help out and I'm feeling guilty.

 

But man, the new decorations are just awful. 

I'm sorry, man.

And yeah, I'm sorry to everyone who is dealing with the c word right now- I hope my aggravated posting doesn't come across as insensitive to you. As I said in my first post- it saved my sister's life and others close to me. I'm just in awe and horror of whatever ineptitude took place in this situation. And scared. 

[shrader]

1 hour ago, Brawndo said:

Women and persons of color unfortunately are more at risk to receive lower quality healthcare in the US Today.  It’s a combination of access limitations, and Preconceived biases on the part of some healthcare providers. 
 

One of the potential issues facing those six is the longer term effects that could be caused by the chemotherapy. There is an increased  risk for developing other forms of cancer, such as lymphoma later in life. Heart, liver and lung complications are another possibility. 
 

I do wonder if it was the same pathologist and if they were over reading the slides and/or the oncologist being overzealous.  I shutter to think that they maybe were involved in a kickback scheme with a pharmaceutical company. 
 

In any case it was malpractice and your friend should pursue all avenues available to her and her family. 

Misdiagnosis doesn’t not equate to malpractice though. The rest of the suggestions here, yeah, that’s where it gets bad. I just don’t have any idea how you can actually prove it. That’s going to take resources that most don’t have access to. It’s early in the process but I’m sure Josie’s friend will do the homework needed to get a much better picture, and has done a lot of it already.

It’s a lot to take on, especially at a time where you’re mentally shaken. And it’s completely natural for any woman or man to be in that situation given these circumstances. If we’re going to acknowledge the possible predatory nature of certain aspects of the health care system, we also need to acknowledge the same from some of the ambulance chasers out there. One needs to be very careful with deciding how to proceed. 

[...]

I wish my brother was misdiagnosed. 

[Brawndo]

1 hour ago, shrader said:

Misdiagnosis doesn’t not equate to malpractice though. The rest of the suggestions here, yeah, that’s where it gets bad. I just don’t have any idea how you can actually prove it. That’s going to take resources that most don’t have access to. It’s early in the process but I’m sure Josie’s friend will do the homework needed to get a much better picture, and has done a lot of it already.

It’s a lot to take on, especially at a time where you’re mentally shaken. And it’s completely natural for any woman or man to be in that situation given these circumstances. If we’re going to acknowledge the possible predatory nature of certain aspects of the health care system, we also need to acknowledge the same from some of the ambulance chasers out there. One needs to be very careful with deciding how to proceed. 

My Company’s Malpractice Insurance makes all providers sit through a CME Course every few years (for  10% discount on our premiums) on how to avoid malpractice claims. The presentation is usually 7-10 cases of malpractice from the what happened from a medical standpoint to the outcome of the ligations. Misdiagnosis of cancer has always been an example presented. An unnecessary treatment, with high probability of side effects regimen was ordered and given. Where it becomes malpractice If Josie’s Friend experienced any side effects nausea, vomiting, or missed work. Couple that with another possible five cases of the same misdiagnosis, these cases will move forward. 

The bombardment of commercials on both TV and radio shows by certain law firms, shows that the ambulance chasing is alive and well. The opening of a branch office directly across from ECMC further cements that.

[Neo]

Am I alone in thinking that getting a lawyer whenever someone errs isn’t always the right thing to do?  I mean, we all err.  Those in more consequential positions err more consequentially, sure.  That’s definitional.  I was misdiagnosed recently, the other way (under diagnosed).  A specialist corrected my generalist.  I was on the wrong medicine for two years.  It could’ve been bad.  I asked the specialist “how was this missed?” out of intellectual curiosity.  I froze the poor son of a gun!  All he could do, I’m sure, was picture himself in a deposition when I sued my GP.  I laughed.  “Dude, I’m not suing, I promise ... did he blow it?”.    long pause ... “He blew it”.  Wanna shut a doctor up?   Ask him about another doctor.

[Neo]

10 minutes ago, Brawndo said:

My Company’s Malpractice Insurance makes all providers sit through a CME Course every few years (for  10% discount on our premiums) on how to avoid malpractice claims. The presentation is usually 7-10 cases of malpractice from the what happened from a medical standpoint to the outcome of the ligations. Misdiagnosis of cancer has always been an example presented. An unnecessary treatment, with high probability of side effects regimen was ordered and given. Where it becomes malpractice If Josie’s Friend experienced any side effects nausea, vomiting, or missed work. Couple that with another possible five cases of the same misdiagnosis, these cases will move forward. 

The bombardment of commercials on both TV and radio shows by certain law firms, shows that the ambulance chasing is alive and well. The opening of a branch office directly across from ECMC further cements that.

The costs of training, time, regulation and insurance ...  whole industries necessary when health care and litigation merge.   Want health care reform?   Want to reduce health care costs?  Want more physician availability and accessibility?    Tort reform ....

Acknowledged ...  I’m not a lawyer nor am I a physician.  I am a consumer, though, and know I’d get more health care for less money if we didn’t jump to “sue!”

Edited October 11, 2019 by Neo

[SwampD]

1 hour ago, Neo said:

Am I alone in thinking that getting a lawyer whenever someone errs isn’t always the right thing to do?  I mean, we all err.  Those in more consequential positions err more consequentially, sure.  That’s definitional.  I was misdiagnosed recently, the other way (under diagnosed).  A specialist corrected my generalist.  I was on the wrong medicine for two years.  It could’ve been bad.  I asked the specialist “how was this missed?” out of intellectual curiosity.  I froze the poor son of a gun!  All he could do, I’m sure, was picture himself in a deposition when I sued my GP.  I laughed.  “Dude, I’m not suing, I promise ... did he blow it?”.    long pause ... “He blew it”.  Wanna shut a doctor up?   Ask him about another doctor.

A lawyer will tell you if you have a case or not. The apathy of some health care “professionals” needs to be brought to light.

Edited October 11, 2019 by SwampD

[Brawndo]

7 minutes ago, Neo said:

The costs of training, time, regulation and insurance ...  whole industries necessary when health care and litigation merge.   Want health care reform?   Want to reduce health care costs?  Want more physician availability and accessibility?    Tort reform ....

Acknowledged ...  I’m not a lawyer nor am I a physician.  I am a consumer, though, and know I’d get more health care for less money if we didn’t jump to “sue!”

Interestingly Texas was one of the First States to institute Tort Reform. Early studies demonstrated that it did not lower healthcare costs as much as expected. The most probable reason is it takes time for healthcare providers to change practice habits. 

To the bold, that makes you one of the smarter posters of the board 

 

1 minute ago, SwampD said:

No. A lawyer will tell you if you have a case or not. They apathy of some health care “professionals” needs to be brought to light.

ABSOLUTELY.  

Some of my colleagues need to be reminded that M.D. does not stand for Medical Deity. 

[Brawndo]

23 minutes ago, Neo said:

Am I alone in thinking that getting a lawyer whenever someone errs isn’t always the right thing to do?  I mean, we all err.  Those in more consequential positions err more consequentially, sure.  That’s definitional.  I was misdiagnosed recently, the other way (under diagnosed).  A specialist corrected my generalist.  I was on the wrong medicine for two years.  It could’ve been bad.  I asked the specialist “how was this missed?” out of intellectual curiosity.  I froze the poor son of a gun!  All he could do, I’m sure, was picture himself in a deposition when I sued my GP.  I laughed.  “Dude, I’m not suing, I promise ... did he blow it?”.    long pause ... “He blew it”.  Wanna shut a doctor up?   Ask him about another doctor.

“I do not know the specifics in the case which lead your physician to that treatment, however that would not have been the course I would have chosen” 

[...]

3 hours ago, Sabel79 said:

Our health care system is a disaster.  

If anything, this is the root of the problem. Insurance funds the treatments.  They want to pay as little as possible.  The doctors don't want to get sued, nor do the hospitals, so they may act with an overabundance of caution (because, ironically, their insurance will skyrocket, or worse, drop).  Since insurance doesn't want to pay for excessive treatment, and they don't want to pay off lawsuits, this causes all sorts of dissonance with the people in between the doctors, the nurses, the billing people, the administrators. 

The administrators are often a bunch of type As whose egos, and lack of wisdom (frankly), make them focus on the wrong things.  They are pushed by hospital boards to find a way to balance budgets.  With any organization, like a hospital or medical group, the survival of the organization is always the first goal.  Not treatment, not saving lives, not outcomes, all of that is second or third to the survival of the organization.  So these administrators think they are doing well by instituting plan D of 2019 (different from plan D of 2018, or 2017).  

Meanwhile, all of this ridiculousness and lack of focus are handed down the line.  The workers, the nursing staff, the janitors, the engineers, the marketing department, the therapists, the PAs, they are worried about the survival of themselves first.  Most go along with the ridiculousness handed down rather than upset their lives.  Some aren't bothered, but many are, because, after all, they went into the health care industry for a reason.

So they work under threat: some are hiding anger, some are hiding anxiety, some hide depression. All of this effects the results of the care they are supposed to provide. Some provide better care than others.  Some don't give a da^m so long as they keep their job.  Some break down.  And, with so many people involved, you will always, always run across outliers of every type: super God-sends, evil people who do things out of malice, people who are so broken they miss stuff, some who are sociopaths and miss stuff intentionally. This latter group, again, are outliers, not representative of the normal, or the even the abnormal, but they exist in healthcare just like they do everywhere else.

The point is to illustrate there are all types of people with all types of motivations.  In the health care industry, especially, there is pressure coming down from all sides.  Most of it begins and ends with financial pressures.  

This is barely even scratching the complexities of the situation, the webs that are interconnected and that are constantly changing.

And all of these people, ALL of them, are male and female, Caucasian, African American, Hispanic, Asian, Catholics, Muslims, Jews, Atheists, Taoists, you name it, the spectrum of all types and backgrounds are represented by the 2019 health care workforce.

The health care system is broken down, and six women are wrongly diagnosed with cancer, not because society is preying on women, not because they are women, but because it's such a complex system, things are bound to f*ck up somewhere and we, the people, have determined that a certain amount of f*cking up is acceptable, and a worthwhile sacrifice to retain the routines, comforts, and luxuries the majority of people - men and women, black, white and otherwise, benefit from as those individuals in the majority define "benefit" for themselves (meaning, the benefiting might not be equal, but it is acceptable by all).

It's sick and demented to imply a white male card is all that is needed to get better care.  My brother died before he was 52 from cancer and went bankrupt trying to fight it. His widow, a woman, BTW, has suffered mightily because his white male card apparently didn't work, was lost, or was otherwise ineffective.

My uncle died young of cancer, too, penniless.  His white male card was worthless as well.  

 

 

Edited October 11, 2019 by ...
Several oopsie-doodles in the post. Time for bed!

[Neo]

20 minutes ago, Brawndo said:

“I do not know the specifics in the case which lead your physician to that treatment, however that would not have been the course I would have chosen” 

Yeah, I’m out of my depth on this topic, for sure.  I believe I’m sympathetic to physicians, maybe to a fault.  I see scientists who need to be artists and believe that inevitably comes with error.  I’m grateful they try.

On another note, I’m sympathetic to lawyers, too.  The same science/art construct applies.

Glad for Josie’s friend, in the situation’s totality.

Edited October 11, 2019 by Neo

[Sabres Fan in NS]

Now that we are discussing health care issues ...

Your system is not perfect and I know that many multi-millions do not have insurance coverage, but at least you can get care, even without insurance in critical cases.

Here in Canada we have millions without a primary care doctor.  There are wait lists a mile long for tests and to see specialists (my wife is on a 3 year wait list to see an allergist).  People are dying all the time after a diagnosis, while waiting for treatments.  Doctors here do make mistakes, but we could not sue them even in the most severe malpractice situations.