What the hell is wrong with people

[Rob in PA]

I'm sorry but I can't take it anymore after reading a couple news articles today.

One article was about exciting new cancer treatments being introduced by scientists yet on the local level many doctors can't keep up with new treatment and either choose to ignore them or just plain don't know about them. In todays society, we can't find a way to communicate between scientists and oncologists to keep them informed about the latest treatments, genetic testing, etc....

Really?

Here is the real kick in my gut that made me want to post this rant....regarding Miley Cyrus who USED to be one of my daughters favorite singers (emphasis on USED TO BE)!

"Miley Cyrus' latest music video has drawn a lot of looks -- enough to help her break a record.

The singer's "Wrecking Ball," which debuted Monday, has earned the most views on Vevo in a 24-hour period.

She took the record back from One Direction, whose "Best Song Ever" video earned 10.9 million Vevo views in its first 24 hours back in July. Previously, her video for "We Can't Stop" held the record with 10.7 million views upon its June release." -- By JESSICA DERSCHOWITZ / CBS NEWS/ September 10, 2013, 11:30 AM


So, in a mere 24 hours time, Miley "tramp" Cyrus can get 10.9 MILLION viewers to watch her gyrating on a wrecking ball while licking the head of a sledge hammer....while naked, but we can't find a way to keep doctors up to date on the latest scientific advancements in cancer care?????


WTF is wrong with society???????

Sorry if this is off topic, but I really don't think it is too far off topic when demonstrating where our values lie.


Lastly, all you newly diagnosed cancer patients.....push, push, push to have your onc research ALL available treatment options or GET A NEW ONC! You are your own best advocate.

Best to all,


Rob

[Voxx66]

People like distractions. Thinking about cancer isn't pleasant so they look away. Until of course it happens to a loved one or a close friend or themselves. Then they look up and wonder what happened and why there is no easy fix.

(personally I find Miley's video unpleasant and not something I want to see again - and I am the opposite of a prude)

Also off topic - but good pennant race. I have to give the Pirates much respect.

[Rob in PA]

I guess I understand people want a distraction Voxx....but personally I found that video to be more repulsive than cancer! (and I'm a redblooded, country girl lovin male but dang, that's just not right!)

...and yes, props to the Pirates! Good thing too, because the Steelers looked horrendous!

[Rockovage]

Here`s the article , I saw it on yahoo news last night . Like vox says unless you or a loved one are directly involved with cancer you tend to look away .
Mark


U.S. cancer-care delivery is 'in crisis':
| Reuters – 20 hrs ago..

By Sharon Begley

NEW YORK (Reuters) - Cancer treatment has grown so complex, many U.S. doctors can't keep up with new information and are offering incorrect treatment, failing to explain options and leaving patients to coordinate their own care, according to a report released on Tuesday by the Institute of Medicine, part of the National Academy of Sciences.

The 315-page report, "Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis," identifies a long list of reasons for the crisis, including a growing demand for cancer care as more people receive a diagnosis and a shrinking oncology workforce.

"Probably on average the quality of care is not bad, but we know there are people who are not getting the (highest) standard of care," said Dr Patricia Ganz, who chaired the institute's panel that wrote the report and is a professor at the Schools of Medicine and Public Health, University of California, Los Angeles. "Patients need to be asking, Is my doctor giving me appropriate treatment?"

Treating the disease, which can require precisely matching a tumor's molecular characteristics to a drug, has become so complicated that many physicians lack "core competencies in caring for patients with cancer," the report concludes.

Groups such as the American Society of Clinical Oncology (ASCO) have developed scores of treatment guidelines for virtually every stage of nearly every kind of cancer. But clinicians' adoption of the guidelines is not widespread, finds the IOM. Some physicians believe their own experience trumps scientific evidence, others suspect their patients are different from the norm, and still others are simply unaware of treatment guidelines.

"When cancer patients understand that their local doctor in their community hospital doesn't have half the new knowledge about their particular subtype of cancer, well, 'gobsmacked' would pretty well describe it," said Clifton Leaf, a cancer survivor and journalist whose new book "The Truth in Small Doses: Why We're Losing the War on Cancer - and How to Win It" is critical of the cancer establishment.

PALLIATIVE CARE, GOALS UNADDRESSED

Doctors are also falling short when it comes to simpler challenges. Too few oncologists know how to provide palliative care to keep patients comfortable when treatment has failed, or even how to make referrals to palliative-care consultants, the IOM found.

Patients can't even assume their doctors will communicate adequately. Many are failing to explain the pros and cons of treatment options, let alone asking patients about their preferences. Nor are they spelling out the goals of treatment or even what treatment patients have received and how it might affect their future health. Some chemo, for instance, raises the risk of heart disease.

Most physicians also seem unwilling to deliver hard truths: Up to 80 percent of cancer patients with poor prognoses incorrectly believed their treatment could result in a cure, the IOM found.

Responding to the criticisms, ASCO President Dr Clifford Hudis said, "I have no reason to doubt the accuracy of the IOM report," adding that "every person with cancer should receive state-of-the-art, high-quality and compassionate care.

"A large minority of oncology practices" have signed on to ASCO's program to improve the quality of care, he said. The initiative includes sending anonymized patient charts to ASCO experts, who tell the physician if they performed the correct tests - such as probing a lung cancer for a particular gene mutation - and offered the appropriate therapy. If they did not, that is flagged.

Studies show this quality-control program is working. "But there are still barriers to oncologists staying up to date" with the complexity of cancer care, said Hudis, a breast cancer specialist at Memorial Sloan-Kettering Cancer Center in New York, including finding time to travel to medical meetings and read scientific journals.

Many cancer patients know all too well that cancer care "is often fragmented and poorly coordinated," the report finds.

Jessie Gruman, a four-time cancer survivor who in 1992 founded the nonprofit, Washington, D.C.-based Center for Advancing Health, was recently diagnosed with stomach cancer. In one single year eight physicians, starting with her oncologist and surgeon, cared for her, and only once did two of them communicate directly with each other.

"Otherwise, I have been the sole arbiter of who gets what information and which test results from the others," Gruman wrote in an essay in "Health Affairs" earlier this year.

Just over 1.6 million new cancer cases are diagnosed each year in the United States; by 2030, 2.3 million will be as the population ages. That will present even more challenges, starting with too few oncologists and facilities to care for the rising number of patients: A report commissioned by ASCO concluded that the nation will be short 2,500 to 4,080 medical oncologists by 2020.

Most of the new cancer patients are elderly and suffering other illnesses, which means they tend to be weaker and thus less able to tolerate punishing therapy. Age also complicates treatment because few new chemotherapy drugs or other treatments have been tested in older patients; drug companies that sponsor these clinical trials prefer younger patients who don't have other diseases.

Sadly, said Ganz, little progress has been made since 1999, the last time the IOM examined the issue, in the quality of care cancer patients receive. That report's recommendations for implementing evidence-based care and making other changes, she said, "have had limited uptake."

(Reporting by Sharon Begley

[raym]

I also havethe impression that some set of doctors just don't keep up with latest (or esoteric) treatment options. You can see it here when people ask their oncologist bout HIPEC or HAI and they know nothing about it. But I can see it in my job as well. I work in software development and things change so much it is difficult to keep up with everything out there. There is just too much work and not enough time. One tends to run with what they know. I do know my oncologist keeps up with the latest.

[Voxx66]

Oddly enough it seems to happen even within the same practice. My primary oncologist has farmed me out to another one who is very high on the pump. I discovered from talking to another patient that her oncologist in the same practice doesn't think much of it. That makes it even more confusing and more necessary for us as patients to exercise due diligence by doing our own research.

Raym - in my younger days I was very interested in programming and came close to getting a degree in it (decided instead to get the much more useful duel Political Science/Philosophy degrees. Please read this with dripping sarcasm) When I talk to young programmers it's a whole different world. I am as modern as Borland C++ which leaves them baffled. My first class ever was in RPG III which they assume must be something for making games. COBOL? PASCAL? SAS? 80x86 assembly? I had a job once programming 80186 boards for an HVAC company - let me tell you all about it....nope - go away old guy. ROFL

Rob - the Pirates and Steelers seem to have switched Mojo. I think the Steelers may be better when they get Bell back. Wasn't a Mendenhall fan but I went to Mizzou. I view Illini players with barely concealed hostility.

[vickitwo]

This is OT but...I can't believe the garbage that the entertainment industry puts out there. I personally think it reflects a total lack of talent. They try to make up for it by shocking, and disgusting the public. Give me a singer who can truly sing, a dancer that can really dance, an actor who can really act and a comedian who can make you laugh at the ironies of life without the foul language and crudeness. Less is more, leave some things to the imagination. Unfortunately, Miley is getting just what she was seeking.....plenty of media attention and she is laughing all the way to the bank. I am embarrassed for her. She has sold her dignity. Long gone are the days when Lucy and Ricky could not be shown sleeping in the same bed. So sad.

[Voxx66]

For me, I find the Miley thing unfortunate. It seems desperate, contrived, and not sexy by any stretch of the imagination. If I saw her on stage at a strip club I would walk away. (Not admitting I go to such places ha - not exactly denying it either double ha.)

[NWgirl]

Rob you make a good point (a number of them) about working with your doctor to come up with appropriate treatments. I read things here and take them to my doctor to discuss and together we come up with plans - for now and for later. Educating myself here has been invaluable to making sure I'm getting treated properly. When I'm at a cross roads, twices I've gotten 2nd and once even a 3rd opinion. I've always stayed with my oncologist - but I do so because I know he's doing a great job. It's not just taking his word for it or assuming he's doing a great job - I KNOW he's doing a great job.

It would be nice if we could all just sit back, show up for our scheduled appointments and not have to educate ourselves and/or question anything. But that's not the world we live in. It is to our benefit to be educated about treatment options, ask questions and be involved with our treatment plans.

[GrouseMan]

Entertainment, and fascination with the antics of media stars are one thing.... Its mindless, fleeting, and absolutely worthless. It doesn't expand anyone's horizons knowledge or anything that really matters to most of society. But the media being what they are flocks to it like moths to a flame, in the name of ratings. If the media would ignore it, it would all go away, but it makes media money!

Disseminating information to a critical mind like an oncologist, or surgeon is much harder to do. They only have so much time and they will pick and chose what they read and analyze. Studies have shown that oncologists are the doctors least likely to spend time with a pharmaceutical rep. Even though its been shown that the pharmaceutical rep is likely the very best source of information about new drugs and clinical trial information. Still even when presented with new information they need to weight it and determine if they feel this information is strong enough to change their existing methods. I read a lot of the same information, and I have to tell you... The clinical trial information is complex, and the PFS numbers and OS numbers are little different than the tried and true methods in a lot of cases. Usually those initial studies are small. Most oncologists want to see data for a much broader and more representative group of people with much more significant/larger PFS and OS before they will take a chance on a new drug.

This Dr Kenney I hear so much about with the HAI pump procedure. She is the expert it seems, but others may never be as successful with it as she is. She may have a particular surgical technique or a "feel" if you will for exactly how to place the catheter in the liver to maximize the effect that perhaps only she is able to do. Others attempting to replicate the same results will likely take a long time to equal her success, because they haven't yet developed this "Feel" for it. Surgery is high technical art. Its the bold oncologists and surgeons at MSK, MDA etc that take well informed risks... They do research. Most of the surgeons and oncologists at local and regional hospitals are generally not willing to take those risks. Otherwise I think they would be working at those exceptional institutions.

Many oncologists are trained mostly as hematologists, that get board certified in oncology, as separate specialty. They use their hematology education to read your weekly blood work, and determine if the poisons you are taking is doing any substantial harm to you. They try to walk a very fine line, adjusting your chemo to keep your blood chemistry markers as close to normal as they can. Every time they change your chemo, add or remove drugs, they need to fully understand how that impacts your blood chemistry, otherwise they can't tell if they are doing you more harm than good. I think this more than anything prevents new drugs from immediately being adopted quickly by them all.... They are a conservative lot I would say. I think they want someone else to take the chance and set the pace, to convince them Drug X protocol is better than Drug Y protocol. All this takes enormous time to do. Unfortunately to those of us that use this support forum, we may well run out of time. Its frustrating, and you will get no argument out of me that it makes me angry that things take so long. I above all, having spent quite a lot of time attempting to find new anti-cancer drugs, eat my liver worse than many. I berate myself often for not being able to do more faster. I have known too many people that have lost loved ones to many different "kinds" of cancer. What can I say to them? - Damn sorry about your luck if you could just hold on 5 to 10 more years maybe the drug I am working on might help you a little! I feel terrible and pissed off! I also feel guilty as hell, as on my mothers side of the family we very rarely had any type of cancers. My great grandmother was the last that anyone remembers having been diagnosed (rectal) and that wasn't until she was in her middle 90's!

Everyone take a deep breath. We will have to be our own advocates. We may have to bring things to our doctors attention. But you will also have to be either patient with them or locate other docs, surgeons etc. that is/are willing to listen to you and communicate with you about your disease, treatment and options. Also - There is no such thing as a DUMB question. Only dumb answers, and when they give you a dumb answer or an answer you don't understand - call them on it. After all you and your insurance is paying for their time. Make them earn it.

[raym]

Raym - in my younger days I was very interested in programming and came close to getting a degree in it (decided instead to get the much more useful duel Political Science/Philosophy degrees. Please read this with dripping sarcasm) When I talk to young programmers it's a whole different world. I am as modern as Borland C++ which leaves them baffled. My first class ever was in RPG III which they assume must be something for making games. COBOL? PASCAL? SAS? 80x86 assembly? I had a job once programming 80186 boards for an HVAC company - let me tell you all about it....nope - go away old guy. ROFL

Oh I'm an old programmer guy too, been doing it since 1982..but have kept up with technology

[Voxx66]

Ha - yeah - didn't mean you - I haven't really kept up except for HTML which hardly counts

[PGLGreg]

So, in a mere 24 hours time, Miley "tramp" Cyrus can get 10.9 MILLION viewers to watch her gyrating on a wrecking ball while licking the head of a sledge hammer....while naked, but we can't find a way to keep doctors up to date on the latest scientific advancements in cancer care?????

WTF is wrong with society???????

Our doctors and researchers need to learn modern communication skills, that's for sure. Step 1: Get naked.

What's wrong with society? A friend of mine, growing up near Gary, had an old lady in his town, who pretty much summed it up: Sometimes I think it's one thing, and sometimes I think it's another. And sometimes, I just don't know.

[dianne052506]

Has it occurred to anyone what an elite group we are here? Although this site was developed for younger people with CRC, there is still a good age range, and if you include patients whose caregivers are here, the range widens significantly. We have each been lucky enough to have found this on-line forum for support and for information. Much of that information is quite specific and will only apply to certain members-- TACE, HAI, RFA, HIPEC, bone or brain mets, prevention of damage with pelvic radiation -- but we have our own group of lay experts. Although I read a lot of posts that don't apply to me, I am the first to admit that there a big chunk about CRC that I don't know, and only a small slice that I feel comfortable discussing.

My point here is not just to compare us to the typical patients, but also to compare us with general clinical oncologists. My primary onc had well over 1000 patients just a couple of years ago before he added a partner. Although I don't know how many of those are active and under treatment vs having completed treatment and only getting followup care, I'm comfortable that the number is not a significant overestimate because my doc left a group practice and started as a sole practitioner almost 3 years ago. The parting was not friendly, and the patients that left had to go to some effort to get their files transferred. So that 1000+ he told me a year ago could not have contained many deceased individuals.

1000+ patients, 1 doctor, how many types of cancer, at how many stages, how many variations on mets, side effects, complications, genetic mutations, etc. In addition, I know this particular doc does rounds for his patients at the nearest hospital. And lets not forget clinical trials that we want our doctors to be aware of so they can make recommendations when needed. It's really fairly frightening. I really don't know doctors keep up. Just the numbers alone make a case for going to a big cancer center where you can see a specialist. I want to believe that local doctors out there are not ignoring new developments, but I also think it is unrealistic to expect a doctor to know have life or death knowledge in so many areas with so many variables.
All Miley Cyrus has to do is look vulgar.

[O Stoma Mia]

Here`s the article , I saw it on yahoo news last night ...

Hi Mark - Thanks a lot for posting the Reuters article. I found it extremely interesting. Since I think we might want to make reference to this article in later discussions, here's a direct link to the article itself:

U.S. cancer-care delivery is 'in crisis' (Reuters: September 10, 2013)
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