Memorial Sloan Kettering Cancer Center - Honest Review

debugy2k
debugy2k Member Posts: 85 Member
edited December 2017 in Colorectal Cancer #1

This is going to be a long post but I think people should honestly know about Memorial Sloan Kettering Cancer Center if they plan on going there.

A little history first:  My mom has Stage 4 Colon Cancer mets Liver.  Been on chemo since late 2015.  She recently got Y90 radiation done for the liver.  Now off chemo for 3 months because they suggested Lonsurf (last line chemo) which we didn't want and always wanted a surgical option to remove the main tumor.  Our local hospital where she gets her chemo suggested us to see if Memorial Sloan Kettering Cancer Center in NYC has any clinical trials available for us.  So our oncologist helped us get in contact with MSKCC and that's where the "annoyance" (to put it lightly) began.

We love our local hospital (Englewood Hospital in NJ).  Everyone were friendly there, nurses, assistants, secretaries and even "hot shot" doctors.  They even do things fast...pick up the phone right away to get in touch of other doctors for a quick consult or suggestions.  Love our local hospital.  We only wanted the 2nd opinion because we didn't like the Lonsurf last line chemo suggestion.  So our oncologist suggested MSKCC.

I know MSKCC is a specialized place that does only cancer.  So of course they should be considered the best compared to local general hospitals.  They got the "brand name" backing them.  But I've asked a few of my business clients that used them before and they all say you're "just a number" there.  All of them prefer the friendlier local hospitals in the long run.  But of course we wanted a surgical option or clinical trial.

First sign of "arrogance" from MSKCC is that they auto schedule us.  Which is fine for us because mom doesn't work and I have my own business that I can take off at any time.  But they didn't ask us what day we're available to go and just assume people are just waiting for them!  But it's cancer and mom's been off chemo for 2 months at that time so we agreed.  Remember, going from NJ to NYC takes about an hour (if no traffic) for us plus tolls, expensive parking and food comes out to like $200 a day to go out there.  

First time seeing the oncologist, normal wait time (normal being 1.5 hr), we spoke to his assistant first since he wanted to get a history of everything.  It was a nice chat with the ASSISTANT which we explained everything and took about 15 minutes.  Then the actual oncologist came in.  He spoke to us for 3 minutes!!! 3 minutes!!!  He said that there's no clinical trials for mom but maybe a surgical option.  And told us to speak with the surgeon.  Then he left.  Didn't even say which surgeon to talk to or what department to contact to schedule.  He said someone will call us in a week.

Wasted a week waiting around for a call.  Then MSKCC surgical department called and said they scheduled us to speak with the surgeon a week later.  Yes, auto-scheduling again.  

So next week we went to speak with the surgeon.  Surgeon spoke to us for....1 whole minutes!! 1 minute!!!  He said that IF they do surgery then they remove all the tumors or none at all.  There's no option for them to remove the primary tumor and leave the rest for chemo.  Then he said for us to talk to the liver specialist since he said "most people die not from the surgery but from liver failure afterwards".  Seriously?!?!  Die/death is not something you should be saying to cancer patients.  Give them hope and kindness even if it is terminal.  So afterwards he said someone will call us to schedule.

Got auto-scheduled again for a fibroscan on the liver.  Fibroscan is a non-invasive test of the liver to see if there's any problems.  But of course the test was non-conclusive because they said it could be false-positive because of the tumors or from the inflammation from the Y90 radiation from last month.  Then they say we should do an upper endoscopy to check for varices.  

Auto-schedules again and did the upper endoscopy.  They said that everything looked good from the upper endoscopy.  And that they will pass the reports back to the oncologist.  

Waited a week and got auto-scheduled again to see the oncologist the day after Christmas.  Hoping for good news that we can do the surgery.  Got there and had to wait 2 hours because the oncologist was running late (or maybe enjoying a long holiday lunch).  Finally came in and guess what...he set a whole new low record of 30 SECONDS!!  30 SECONDS!!!!  He said that surgical decision is made by the surgeon.  He said that he doesn't know because they're different departments.  Then he left.  SERIOUSLY!!!!  Make us come all the way out ther for 30 SECONDS of BS!  Could've told us over the phone or even just don't schedule us to even go in for that BS.  

So I messaged the surgical department about it on the MSKCC patient portal.  Asking what's going on and how to proceed.  Got a call back from the surgical department ASSISTANT.  She said the surgeon says not to do the surgery and just get back on chemo.  SERIOUSLY!!!  The actual surgeon can't even take their time to actually talk to us?  We wasted a whole month for all this runaround.  Total time spent talking to actual doctors was less than 5 minutes.  

I WILL NEVER RECOMMEND THIS PLACE TO ANYONE!!  This place is just "TOO BIG TO CARE".

PROS - Less back pain since your wallet will be lighter for paying the primium NYC parking and food.

CONS -
1) You're just a number
2) They bill the insurance companies over double the local hospital and they can get away with it
3) They don't give a rats a$$ about you
4) Auto-scheduling like everyone has nothing better to do with their lives
5) You'll probably get more love and advice from your Starbucks barista
6) They love wasting your time

THIS PLACE IS TOTALLY UNACCEPTABLE FOR BEING A SPECIALIZED CANCER HOSPITAL.  WILL NEVER GO THERE EVER AGAIN!!  STAY FAR AWAY!!

         

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Comments

  • abita
    abita Member Posts: 1,109 Member
    Sorry, that sounds awful. I

    Sorry, that sounds awful. I was going to get a second opinion there, but my surgeon and oncologist both seemed to genuinely care about me and both are great in their fields, so I didn't. Looking like glad I didn't waste my time.

    Why would they say die from liver failure after? What was the question you asked? My doctors never mentioned that. In fact, what I am told is that the liver regenerates. 

  • debugy2k
    debugy2k Member Posts: 85 Member
    abita said:

    Sorry, that sounds awful. I

    Sorry, that sounds awful. I was going to get a second opinion there, but my surgeon and oncologist both seemed to genuinely care about me and both are great in their fields, so I didn't. Looking like glad I didn't waste my time.

    Why would they say die from liver failure after? What was the question you asked? My doctors never mentioned that. In fact, what I am told is that the liver regenerates. 

    The only question we asked

    The only question we asked the surgeon was if he is able to surgically remove the tumors (either all or just the main tumor).  Then he said it's not if he can do it or not but if the liver can handle it afterwards.  My mom has been physcially and mentally strong throughout this whole process.  I'm pretty sure her body can handle the surgery.  That surgeon only said most people die because of liver failure a few months after the surgery.  It's like going to a mechanic and have him saying "It's not if I can do an oil change or not but if you're going to crash your car afterwards".  MSKCC is so messed up.  

  • abita
    abita Member Posts: 1,109 Member
    "most people de a few months

    "most people de a few months after the surgery"? That does not sound right. How many lesions are on her liver? When you say main tumor, do you mean the tumor in her colon? I am asking because my surgeon said the 3 lesions on my liver are where they can be removed but I must do chemo first to shrink them. I am hoping the person you spoke to meant most of the people who die, and not most of the people who have surgery.

    What has the doctors you trust say about removing them? 

  • tanstaafl
    tanstaafl Member Posts: 1,299 Member
    Thanks

    Thanks for the inside and street views.  That is a daunting story.   Autoschedule seem to be one reason for their local/distance requirements. 

    It sounds like they lost interest when you were not classified as an easy candidate for their more specialized treatments, a trial or a curative treatment.  After that it sounds like they are going through the motions, until you go elsewhere. 

    Even those that they(MSK) are interested in are often pushed to limit the interview time but they don't report brevity like you experienced.

    abita:  :... what I am told is that the liver regenerates

    It is hoped that the liver regenerates, the remaining liver fraction or stub doesn't always do so, and then liver failure occurs.  

  • abita
    abita Member Posts: 1,109 Member
    edited December 2017 #6
    tanstaafl said:

    Thanks

    Thanks for the inside and street views.  That is a daunting story.   Autoschedule seem to be one reason for their local/distance requirements. 

    It sounds like they lost interest when you were not classified as an easy candidate for their more specialized treatments, a trial or a curative treatment.  After that it sounds like they are going through the motions, until you go elsewhere. 

    Even those that they(MSK) are interested in are often pushed to limit the interview time but they don't report brevity like you experienced.

    abita:  :... what I am told is that the liver regenerates

    It is hoped that the liver regenerates, the remaining liver fraction or stub doesn't always do so, and then liver failure occurs.  

    what percentages don't

    what percentages don't regenerate? I mean, I don't have a choice, the tumors have to be removed.

  • debugy2k
    debugy2k Member Posts: 85 Member
    I know liver regenerates but

    I know liver regenerates but of course not back to original size.  But this past 2 years, the normal chemo and that Y90 radiation did wonders for the liver.  Pretty much most of the tumors are gone compared to the original CT scan.  That's why we wanted a surgical option to remove the main colon tumor and just leave the rest for chemo.

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    debugy2k said:

    I know liver regenerates but

    I know liver regenerates but of course not back to original size.  But this past 2 years, the normal chemo and that Y90 radiation did wonders for the liver.  Pretty much most of the tumors are gone compared to the original CT scan.  That's why we wanted a surgical option to remove the main colon tumor and just leave the rest for chemo.

    They won’t ever do that

    If they can’t get rid of everything they will not do surgery ever. Not sure why your original doctor would send you there knowing that’s what you were asking for. I am so sorry you went through all of that only to be disappointed. 

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    abita said:

    what percentages don't

    what percentages don't regenerate? I mean, I don't have a choice, the tumors have to be removed.

    if they don't think your liver will regenerate, or there is any cause for concern they will not do the surgery. If your liver is healthy other than tumors, most likely it will all go fine. Please don't let this scare you. 

  • aoccc2015
    aoccc2015 Member Posts: 37
    i have been to MD anderson 3

    i have been to MD anderson 3 or 4 times and all the points are almost right on. For the 50k you get charged for a scan or two, you cant offer free parking? lol. The colon and liver surgeon had not even spoke to eachother so their work was told to depend of what the other did. So I really went in circles. Too many patients for them to properly prepare. Scary.

  • abita
    abita Member Posts: 1,109 Member

    if they don't think your liver will regenerate, or there is any cause for concern they will not do the surgery. If your liver is healthy other than tumors, most likely it will all go fine. Please don't let this scare you. 

    Thank you! That is what I

    Thank you! That is what I thought, but since my surgery is potentially a month away, it is all I think about. I asked if maybe my liver was damaged from all the drinking I did in my late teens and early 20s. THe practical nurse laughed, said if that was an issue, everyone would have damage. And that they checked it on the scans. This was at my 2nd infusion. I have also been trying to drink lots of water since my liver is processing chemo drugs and needs the water.

  • debugy2k
    debugy2k Member Posts: 85 Member
    Trubrit said:

    So very sorry to hear of your bad experience

    It is always frightening, when you feel that you haven't been taken care of properly.  I hope that you find a place where you feel your mum is comfortable.

    Tru

    Thanks.  I was really shocked

    Thanks.  I was really shocked at how MSKCC treated us (and maybe many other patients as well).  They're supposed to be one of the top cancer centers in the country but felt totally neglected.  We're so in love with our local hospital and their top notch care there.

    Also, I'm the son (only child).  Tongue Out

  • tanstaafl
    tanstaafl Member Posts: 1,299 Member

    They won’t ever do that

    If they can’t get rid of everything they will not do surgery ever. Not sure why your original doctor would send you there knowing that’s what you were asking for. I am so sorry you went through all of that only to be disappointed. 

    getting to NED

    What is possible varies with the patient and the doctors.  Basically some patients are able to combine multiple treatments and surgeries to get to NED, despite being written off by most doctors. 

    However one does not just walk up to a hospital or even MSK and say "give me the best" or max.   It's more complex than that, improving odds and outcomes, finding better options, finding ways around "standard answers" and denials.   For us, it meant nonstandard chemistries taken sooner, more continuously, improving details, and finding one surgeon willing (and able) to go beyond "standard".   

    You have to be your own advocate.   The right combination of effort, capabilities, resources and less common answers often can improve a situation far beyond "standard".  The average or even "expert" doctors don't know and can't help with things they don't know about but can be rude and/or discouraging.       

     

  • debugy2k
    debugy2k Member Posts: 85 Member
    aoccc2015 said:

    i have been to MD anderson 3

    i have been to MD anderson 3 or 4 times and all the points are almost right on. For the 50k you get charged for a scan or two, you cant offer free parking? lol. The colon and liver surgeon had not even spoke to eachother so their work was told to depend of what the other did. So I really went in circles. Too many patients for them to properly prepare. Scary.

    Yea, MSKCC has a garage in

    Yea, MSKCC has a garage in their own building but I guess it's a 3rd party garage or something...3 hrs came out to $80.  The only good and crazy thing at MSKCC is that they have that coffee/tea station (like in every hospital) that gives you awesome coffee drinks.  Well the crazy thing is that there's a DEDICATED guy that stocks that small station and cleanup.  His ONLY job is to do that all day long.  So you see patients raid the station then he goes wipe it down, stock more tea bags, crackers and cups/napkins.  Sometimes we went a bit earlier and was there for like 6 hours and that's all that guy does.

    Also, I checked on my insurance...they charged my insurance $100K+ for 1 scan.  I swear they're just screwing with patients just so they can cash-in on the insurance money.  They practically charges double and triple amount compared to what my local hospital does.

  • Trubrit
    Trubrit Member Posts: 5,625 Member
    debugy2k said:

    Thanks.  I was really shocked

    Thanks.  I was really shocked at how MSKCC treated us (and maybe many other patients as well).  They're supposed to be one of the top cancer centers in the country but felt totally neglected.  We're so in love with our local hospital and their top notch care there.

    Also, I'm the son (only child).  Tongue Out

    A son, that is even better

    I think I already knew that. Just blame it on chemo brain. 

    Tru

  • Ruthmomto4
    Ruthmomto4 Member Posts: 707 Member
    abita said:

    Thank you! That is what I

    Thank you! That is what I thought, but since my surgery is potentially a month away, it is all I think about. I asked if maybe my liver was damaged from all the drinking I did in my late teens and early 20s. THe practical nurse laughed, said if that was an issue, everyone would have damage. And that they checked it on the scans. This was at my 2nd infusion. I have also been trying to drink lots of water since my liver is processing chemo drugs and needs the water.

    Abita
    It’s so easy for me to say this but don’t worry. So many have resections and ablations and they still have working regenerated livers. They are willing to do it again on my husband and that’s why they want to shrink the tumors first. The more that is left the better your odds are. I am hoping to hear good news about you soon!!!! Snuggle those beautiful kitties and try and stay warm, it’s a whopping 6 degrees here in Ct right now brrrr!
  • abrub
    abrub Member Posts: 2,174 Member
    At MSK, the doctors have limited clinic days

    Mine only sees patients on Thursdays.  That is his assigned day.  Thus any appointment needs to be fit in on a Thursday, and are booked months out in advance.  New patients are fit in as quickly as possible.

    I have found the staff and treatment at MSK to be of highest quality.  That said, there are some jerks for drs there as well.  I did have a consult with one oncologist who didn't listen to a word I said; misquoted what his fellow had heard from me prior to his entering the room, and was a pompous ****.

    The doctor I went with always runs many hours late because he will not leave a patient with any questions.  The 15 minute slots that MSK assigns him are never adequate, because he wants to address all of your questions and concerns.

    The experience you describe is of one of the doctors and his staff; not representative of MSK (tho I will agree that you must be ready to wait a long time at your appointments.)

  • Macdougal
    Macdougal Member Posts: 18
    Caught in the machine

    MD Anderson is also a machine.  Auto schedules all the time and pray you don’t miss a call from someone trying to work with your schedule.  Oncologist runs a minimum an hour late and tends to shut down conversation.  Only 2 days a week of clinic.  She has never talked in terms of stages, doesn’t seemed that concerned that my last CT showed a lesion (of something, might not be a metastasis) on my spine, which would take me to IVb.  I’m witholding a lot of feedback to her because I have an extended consult scheduled with her next Thursday and want to hear her out after she gets all the data she wants.  I get her approach but I’ve had to do a lot of thinking to figure some of it out.

    Their care is spotty but overall good.  Most services (MRI, CT, etc) are good. Not happy with the port surgery clinic and have a list of 17 complaints about that experience.  Their pain managment is ridiculousy under or overdone. i made them schedule me a session with their pain management specialist to sort things out.  I had a dr prescribe me 4mg of Dilaudid for a level 3 abdominal pain. And nothing at all after the port surgery.

    I had to drive down there and camp out at the receptionist to get some FMLA paperwork signed, otherwise I would have missed a deadline.

    But my company is very flexible on work schedule, has a disability case manager assigned to me and the insurance is fantastic.  Treatment is very aggressive chemo but so far so great.

    Your experience is awful but these big places are machines in order to serve the enormous demand for their services.  I work at a company 5 Times the size of MDA and can’t fault them some disorganization.  

  • Annabelle41415
    Annabelle41415 Member Posts: 6,715 Member
    Sorry

    Sorry that your mom had to deal with all this as it seems horrible.  It sounds like a big waste of time.  It is similar to the experiences that I've heard about with CCTA (Cancer Center Treatments of America).  The CCTA advertises on TV that they have appointments available now, and yes they do, but it is all auto-scheduled like you said.  Not many people that I've seen post about CCTA have good reviews and you posting about Kettering is a good warning to people about your experience.  I'm hoping that your mom can get better results elsewhere.  Sometimes when you are "just a number" you don't always get the best care.  Wishing her well.

    Kim

  • mom_2_3
    mom_2_3 Member Posts: 952
    edited December 2017 #20
    Another perspective

    When diagnosed 9 years ago my first oncological appointment was with a doctor at Morristown Hospital (in NJ).  My newborn baby lay next to me in her carseat and this doctor told me I could expect 22-24 months of life, that I would be in-eligible for surgery and that my choice was the chemotherapy options they had.  I asked him how many Stage IV colon cancer patients he had that had survived greater than 5 years.  "None," he told me.  We had already secured a second opinion with a well-known oncologist at MSK the next week.  We mentioned that appointment to him and he wished us luck.

    The next week I arrived at MSK and I can't disagree that the wait times and parking are a bit crazy.  But when I saw the doctor at that first appointment I was already scheduled for the scans and tests I needed.  

    After 4 chemo treatments I walked into my doctor appointment and my oncologist told me that she had already reviewed my scans, consulted with the surgical board and that my surgery was already scheduled for 11 days later.  I saw the liver and colon surgeons that day and also had my pre-surgical appointment already scheduled.  Things moved fast.  It was like I was on a fast-moving boat and I wasn't the captain.  My doctor completely took over the process.  When I did ask about one of the items scheduled (I had three young children to arrange childcare for) she asked if I had anything more important to do than save my life.  So I took the appointment and worked it out.  But I trusted her completely.   If any of my post-surgical scans showed anything amiss (a couple of ovarian cysts through the years and a liver spot) I would arrive at the results appointments with the follow-up ultrasound already scheduled.  My doctor was thorough and she is quite simply, amazing.

    My surgery was Feb 2009 and here I am today.  I have been in remission for almost 9 years.  In all those years I haven't experienced anything but the highest level of professionalism and care that I could have received.  My oncologist has more Stage IV patients living >10 years than most oncologists even have patients.  Did I have to wait to see her?  Absolutely.  She was late for my appointments every single time.  But I knew that the majority of the patients on those couches were there to see her too, usually 40 per day.  I knew many people needed her skill and expertise.  I would take as little time as I could at my appointments.  I had my questions written down, anticipated her answers and had follow-up questions ready to go.  She hugged me once in all the years I have seen her, the time a few years ago when I thanked her for saving my life.

    My surgeons at MSK were equally stellar.  My liver surgeon was empathetic and kind and skilled with a knife.  My colo-rectal surgeon also was compassionate and caring.  My husband recalls the colo-rectal surgeon coming to see him in the waiting room after my surgery.  My husband had been waiting for 8 hours.  This doctor sat down with my husband (who was alone) and removed his cap and spoke with him for 1/2 hour.  My husband told me how exhausted the surgeon looked.   It was 9:00 pm and I had been his second surgery of the day, yet despite his fatigure, he was kind and caring with my husband.  I would imagine that after a long day like that the last thing I would want to do is sit down with a stranger and spend 30 more minutes as opposed to heading home to my family.  But this doctor just sat with my husband, offering him hope that things would be okay.

    There is not one person that I have been in contact with at MSK that hasn't impressed me.  I don't refute the original poster's story and experience but offer another perspective on MSK.  

  • Mikenh
    Mikenh Member Posts: 777
    I was diagnosed at a local

    I was diagnosed at a local hospital and met with a local oncologist and radiologist and wound up using them for Neo-Adjuvant Chemo and Radiation Therapies. But I also got second opinions because of recommendations from forums and relatives. So I got appointments with an oncologist, radiology doctor and surgeon at Dana Farber Cancer Institute and Brigham and Women's Hospital. They were very hard to get a hold of and you took whatever appointments they had available. When I got there I figured out that it was a high-volume numbers place. I worked in various aspects of customer service for several years and understood tiers of service and where you place your expensive assets and why you restrict access to them. The process was very pipelined. I think that I got about 10-15 minutes of time per doctor though I also got time with their interns. Parking was okay because I knew where to get validation. It was an hour away with no traffic so I usually arrived at 6 AM and worked in their cafe until my appointments. It's more impersonal than the local hospital but I was quite happy to use the Brigham and Women's surgeon as she's board certified and very highly qualified. We have no specialist surgeons in my state for this kind of work.

    Part of this is understanding how the systems work and forum folks do try to explain this but it's a lot of material to cover.

    I also know of two ladies with husbands with stage 4 cancers. They both went to top cancer hospitals (MSK included). The one at MSK said that her husband's oncologist had basically given up. She went to MSK, got on a trial and is still alive and improving and they're both just happy that he's alive and that he has a decent outlook though things are always uncertain.

    I think that the top hospitals have an important place in cancer treatment - certainly for second opinions and for their expert surgeons. But the expectations on service levels and somewhat impersonal intake may need to be set before talking to them.

    The waiting for doctors wasn't that much of an issue with me as I brought my laptop and worked while in waiting rooms waiting for the doctor or for tests.