MSKCC - The Sleazy Side: People... - Advanced Prostate...

Advanced Prostate Cancer
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MSKCC - The Sleazy Side

Darryl
DarrylAdministrator

People everywhere talk about Memorial Sloan Kettering Cancer Center with reverence. But there is a sleazy side too. Given the choices we have for prostate cancer treatment centers, it's time we start to call out those who "use" and "abuse" us and - perhaps - avoid places like MSKCC. Please read these two articles: nytimes.com/2018/09/20/heal...

nytimes.com/2018/09/08/heal...

23 Replies
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I would never tell patients to avoid MSK based on its business dealings. For prostate cancer, It has some of the top practitioners in urology, brachytherapy, SBRT, medical oncology, active surveillance, and medical research. They are also on the cutting edge of genomic research. A patient interacts primarily with his doctor and his staff, but only peripherally with the institution that employs his doctor.

Darryl
DarrylAdministrator
in reply to Tall_Allen

True , usually. But mskcc is not doctor-patient rather institution-patient. In nyc we have 4 or 5 top institutions which could be alternatives.

Tall_Allen
Tall_Allen
in reply to Darryl

What do you mean "institution -patient"? I've talked to many patients who saw specific doctors.

jeff1257
jeff1257
in reply to Tall_Allen

MSKCC uses a team approach. When I was diagnosed, I went there and you could not even meet with a radiologist without first meeting with a surgeon. That may be different if you are going for salvage treatment, but for primary treatment you had to go through their team approach.

MY EXPERIENCE- I actually went for IMRT at MSKCC post Stage IV diagnosis there and was referred directly to a radiation oncologist

That's good to know. I tried to see a radiation oncologist first, but they wouldn't let me. That was 7 years ago. Perhaps things changed. I wish you the best.

Cmdrdata
Cmdrdata
in reply to Darryl

I for one agree with Allen. Personally, my interactions are with my Oncologist who happened to be at a large institution. When I tell my colleague or friend that I am going to Houston for my cancer check, they ALWAYS say, oh, you’re going to MDA? I’d response and say no, I Have been seeing Dr. XYZ because he is a doctor that is interested in finding a cure for my disease. If all I want is getting treatment with “standard of care” protocol, I might as well just find any Onc in my town. Finding a doctor at MDA or MSK or any other large famous institution without some research of who to see is rolling the dice.

PS: I use generic name Dr. XYZ because my current doctor is fighting his own health issue and I have no qualms about changing institution to find the next Onc, when it is time to do so.

Emak1
Emak1
in reply to Darryl

I just finished salvage treatment in June. I met directly with an RO and from there just saw her and her team. After we discussed the plan IMRT + ADT she mentioned that she would take it to the overall GU board to get their perspective, but I never interacted with those folks.

This is an unfortunate story, because I had great interaction with the folks over at MSKCC.

Unfortunately I don't think it's only MSK doing dirty business dealings. I think cancer treatment across the board gets taken advantage of making the rich continue to get richer. In my own experience though minute in comparison I know I was taken advantage of once and later was educated enough to see it. How easy is it for a doctor to talk a patient into anything when they are scared and vulnerable. If a person doesn't have the means how easy is it for a doctor to say there isn't any more they can do.

I had a doctor push provenge on me when I didn't need it. I hear people of status in the prostate cancer world plug the stuff all the time. Why?? It's not a wonder treatment and I talked to two very good doctors at very good hospitals both said there isn't enough evidence out there to say it's anything great. All the push is kickbacks as far as I'm concerned. First day I was diagnosed I had a Urologist take advantage of me by giving me a Lupron shot before Casodex. He asked me how big of a dose and being scared out of my mind he knew I would go with the 6 month. More is better when you know nothing. I knew nothing, scared out of my mind and in his eyes was going to take this for all I'm worth. He knew if that 3,000 dollar shot wasn't given there it would be at Oncologist office soon after. Better his pocket than theirs.

Cancer is a billion dollar business. If anyone doesn't think shady stuff goes on everywhere they are extremely naive. It's like anything, there are good honest people working and representing the healthcare field and bad. It's not unlike auto body shops raping our insurance when damage is done to a vehicle. Health care premiums are high because they are grossly taken advantage of by professionals we trust. They do it because they can.

Ron

ARIES29
ARIES29
in reply to Dayatatime

Unfortunately it seems to happen world wide. Cancer is an industry & here too it is money,money,money & if you point it out to them they tell you to go elsewhere as it happened to me but i found a MO here that puts me before the money grubs elsewhere.

Just my two cents worth.

mjbach
mjbach
in reply to Dayatatime

Be careful what you say against Provenge on here as there are some big believers I heard from when I made some vaguely negative comment regarding Provenge’s magical powers.

Cancer patients are desperate and therefore easily taken advantage of. I know we have been there as well just wanting to believe something would work.

Baselga is not longer with MSKCC.

cancerletter.com/articles/2...

He did not disclose his affiliation with for profit companies in 60% of 180 scientific articles he published in the last 5 years.

.

This is a strong statement worthy of further studies before making any decisions.

I could not read the article, But I think you would have to look pretty hard to find any of our great prostate cancer researchers who have not listed taking money from Drug Companies. Its kind of like a campaign contribution. That being said I have heard many good things about many Institutions in NYC. MSK, Weill Cornell, and Mt Sinia to name a few.

1. I have never understood why people get so upset about use of anonymized patient data.

2. What does upset me is that the license was "exclusive". Where is the patient benefit to that? It's not even so clear as to how this benefitted the start-up, other than to transfer data rights it could resell to others. Granting an exclusive license to one underfunded high risk start up is almost like the vandalization of the compiled data, making it unaccessible to others.

Sorry to be so cynical but cancer is a business and people profit from it. There is nothing wrong with the collection of data as long as it is above board. What is wrong is when some drugs get special consideration from institutions over others because they will produce more profit for the investors.

Wall Street has corrupted the medical field and has been doing so since the early '60s. I don't even want to begin to discuss hedge funds and private equity funds. I have heard of some new cancer drugs that were discovered and the small company would be bankrupted on the initial stock start up for the profit of Wall Street hedge funds. Isn't greed wonderful.

Thank you Darryl! These behaviors are egregious. Physicians whose hands our lives are in are at stake! Unfortunately the policies are not enforced. Such a disgrace...

It's not that money is the root of all evil... it's the love of money that's the root.

Good Luck and Good Health.

j-o-h-n Friday 09/21/2018 1:20 PM EDT

Patients who vote with their wallets will do more to improve prostate cancer treatments than any amount of self-dealing by ethically challenged doctors at large medical centers.

The arrogance on display at MSK is breathtaking but sadly not surprising. Consider the fate of patients who had biopsy or surgery, and explicitly refused permission to share their pathology data for research purposes. MSK ignores that contract, ignores the patients' wishes, and sells their data anyway. Now the promise is that they will "strip away" identifying information. But since they lied on the initial contract, who can believe them now?

The big research centers are quite good at research. Treating patients, not so much. My experiences at the big cancer centers in Boston and at MD Anderson in Houston was best described as a carcass on a conveyor belt. My questions were not answered, my concerns not addressed, and I was frequently reminded how lucky I was to be allowed to pay thousands of dollars to spend a few minutes in the presence of these giants.

At the community oncology center where I'm currently being treated, my oncologist and all the staff knows my name. I've rarely had a question about new treatment options or research findings that wasn't already known. When I ask a question, I get a frank, honest answer. My oncologist reads my emails! The one time I had a question about some research papers that weren't familiar to her, she read them - twice - and agreed to try the strategy in my treatment.

Another thing I don't miss is the propensity for the research giants at the big centers to insult and call their patients names. Because I dare to ask questions of these great minds, I've been called delusional, in denial, "over thinking" (whatever that means - at a research institution!), and worse. When discussing comparative risks with the head of the urology department at a big-name hospital, I was told "Stop thinking like a computer and just do what I tell you."

That attitude, that patients are commodities rather than individuals, is exactly why MSK could make such a grossly unethical deal and not even realize it. If there is no respect for the man, it isn't surprising that there is no respect for his expressed, written wishes regarding his tissues, or his treatment.

Your comments about 'big research centres' sound just like like the oncology department at Chris O.Brian Life House in Sydney.

My experience is that once I step inside one of these mills, they are all alike. It's literally impossible to tell one from another unless you happen to know someone's name who works there. Same treatments on offer, same institutionalized abuse of patients and total disregard for their time and dignity. When I show up a 7:30 AM for the first appointment of the day, it will be 2 hours or more before I'm seen. This isn't the result of an emergency, although that is the most commonly proffered lie. It is a policy.

I see more diversity in the interior of airline cabins.

It's completely opposite in the smaller clinics I've visited. Patients get to know the staff and each other. I've never waited more than 15 minutes past the appointed time, and that delay came with an explanation and apology. The doctor spends as much time as needed with me and every other patient, and adjusts the treatment options in response to my wishes and reactions. The difference is amazing.

Gee whiz big D, that took some major balls but good on you, because we, all of us PC guys have to take a stand and work together, and that includes supporting-in all ways, those who are straight and call out those who are in it for the big buck.

I have no problem with the money aspect but I do strongly object to being taken advantage of, and being kept in the dark!

Maybe they are safe legally but morally, they are bankrupt and the whole crew should be punted out for their poor conduct. They say there were desparate and that is the reason for the investment, yet staff did not know.

A warning to others in this field. We are watching and when we find you using us in this fashion, we will speak out.

Sadly, we have the same thing going on in Canada. The prostate centre in Vancouver is a prime example of the insiders making themselves rich by using patients- and again, keeping us in the dark. I remember when I wanted my prostate biopsy to take it to the US for a second opinion and Dr. Gleave told me that it belonged to him. It was only after I showed up at a board meeting that he was forced to giving it to me or I would have peeled the paint off the walls. He later, when I was strongly considering having surgery, told me, " If you have surgery in the US and come back home and there are problems, I will not touch you". I later found out that for the drug trial he wanted to put me, he was getting $300 per enrollee. I would have been ok with this had he told me up front.

The end result is I waited some four plus months to get sliced and diced and this extra delay might have been the difference to being cured and where I am at today.

So, hug those practitioners who are the good guys, and expose those who are in it for themselves, as a few from MSK and the Van crew are examples of.

I am very disheartened but not surprised. We find this "shocking" in the midst of profiteering and conflict-a-copia in Washington, DC.? The moral arguments and oaths taken seem to mean little to those with the inside-track. Whether it's defending the constitution or the proper scientific use of patient information, it is up to the people and the institutions they represent to uphold the necessary standards.

I am sure that MSKCC is not alone in these types of conflicts. It is a matter of degree and the level of influence such prestigious organizations and institutions can bring to the table that sets them apart. Traditions, oaths and guidelines mean nothing when the institutions and their members ignore them for their own personal benefit.

We all need to be vigilant and do our homework to find out what affiliations clinical trials and the institutions and doctors who offer them, have with the companies who would benefit most from their success.

I believe one should never take anything at "face-value" because it may be a two-headed coin!

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