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Memorial Sloan Kettering Cancer Center - Honest Review

debugy2k's picture
debugy2k
Posts: 68
Joined: Oct 2017

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!!

         

abita's picture
abita
Posts: 489
Joined: Dec 2017

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's picture
debugy2k
Posts: 68
Joined: Oct 2017

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.  

PhillieG's picture
PhillieG
Posts: 4880
Joined: May 2005

If you're looking for guarantees, there are NONE ANYWHERE. Everyone has there own opinions on things and here's mine. I've been with MSKCC for just under 14 years. If I had gone with my first oncologist, I would be using a Ouija board to communicate. I'm sorry you had a bad experience there. Mine has been 100% positive.

PS: You are obviously leaving much of the story out of your post. I call BS on most of what you wrote. 

debugy2k's picture
debugy2k
Posts: 68
Joined: Oct 2017

I'm saying exactly what have happened.  You don't have to believe it if you don't like but calling it BS on what I wrote is just inappropriate.  

PhillieG's picture
PhillieG
Posts: 4880
Joined: May 2005

“That surgeon only said most people die because of liver failure a few months after the surgery.”

I do not believe for one second that any surgeon at MSKCC would ever say anything close to that. Maybe you thought you heard it.  I stand by my comment. 

debugy2k's picture
debugy2k
Posts: 68
Joined: Oct 2017

That's exactly how he said it.  Word for word.  There's always doctors that only see the negative in things and guess we ended up getting that from MSKCC.  We're sticking with our local hospital which gave us 100% service and care.

Glad you had 14 years of 100% service at MSKCC.  Hope you have many more years there....

Helen321's picture
Helen321
Posts: 1382
Joined: May 2012

Get a second opinion there.  I went to both LIJ and Memorial and truthfully they both sucked in some way but to not get a second opinion from a second hospital that specializes in cancer is never a good idea.  Even if you don't end up there as a patient, go for a second opinion at any major cancer hospital.  Doctors are just people, cancer has taught me that.  They can all be wrong and you have to fight for yourself.  Looking back I would have done so much differently.  I would have learned a lot more about my body and been more vocal.  I was just tired and medicated so I didn't make good decisions.  I also put myself into the hands of my sister who apparently panics at the drop of a hat.  Have your backup person be someone who says no when everyone else says yes.  You need someone to challenge doctors and cause conversation to happen.

abita's picture
abita
Posts: 489
Joined: Dec 2017

"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's picture
tanstaafl
Posts: 1287
Joined: Oct 2010

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's picture
abita
Posts: 489
Joined: Dec 2017

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

Ruthmomto4's picture
Ruthmomto4
Posts: 542
Joined: May 2013

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. 

abita's picture
abita
Posts: 489
Joined: Dec 2017

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.

Ruthmomto4's picture
Ruthmomto4
Posts: 542
Joined: May 2013

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!

debugy2k's picture
debugy2k
Posts: 68
Joined: Oct 2017

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's picture
Ruthmomto4
Posts: 542
Joined: May 2013

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. 

tanstaafl's picture
tanstaafl
Posts: 1287
Joined: Oct 2010

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.       

 

aoccc2015
Posts: 37
Joined: Sep 2017

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.

debugy2k's picture
debugy2k
Posts: 68
Joined: Oct 2017

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's picture
Trubrit
Posts: 4569
Joined: Jan 2013

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

debugy2k's picture
debugy2k
Posts: 68
Joined: Oct 2017

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

Trubrit's picture
Trubrit
Posts: 4569
Joined: Jan 2013

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

Tru

Mikenh's picture
Mikenh
Posts: 776
Joined: Oct 2017

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.

abrub's picture
abrub
Posts: 2038
Joined: Mar 2010

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's picture
Macdougal
Posts: 18
Joined: Dec 2017

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's picture
Annabelle41415
Posts: 5877
Joined: Feb 2009

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
Posts: 962
Joined: Nov 2008

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's picture
Mikenh
Posts: 776
Joined: Oct 2017

I have a co-worker that had cancer a year before I did and he went to Boston for treatment at DFCI and I was curious as to why he went there for treatment as it's a real hassle for those of us in New Hampshire. He had a cancer that would normally have taken his life in a few months but they did the Genomic tests on him, told him that a drug would shrink the tumor and allow him to survive and it did. They also told him that it would probably only work for a year and then mutate. And it did. But they had a drug for the mutation as well. So he has to take this targeted therapy and he continues to live (the side effects are a lot less than the Adjuvant chemo that many of us are on). I do not know that our local hospital would have done this stuff. I asked my oncologist for Genomic testing and he basically didn't do it - I sent my biopsy to Mass General and they did it so I know what mutation I have and that information might someday be useful.

What you really want out of a hospital is to survive. I do agree that it would be nice to have easier parking, less waiting time, flexibility in booking appointments, etc. But that stuff really is secondary. I am able to communicate and ask questions with the doctors via EPIC (hospital portal) though I imagine that it's staff and interns that answer the questions or relay them. Sometimes the answers are quite short. I recall asking how long before I would be physically back to normal (in terms of bearing weight) and the response was two words: "eight weeks".

debugy2k's picture
debugy2k
Posts: 68
Joined: Oct 2017

Thanks for the other perspective.  Glad you had a better experience at MSK.  I even told about our experience to our local oncologist and they were surprised.  Probably the positive care and attention you received were great back 9 years ago.  Now they're probably too packed to give individual attention.  

abrub's picture
abrub
Posts: 2038
Joined: Mar 2010

and always have received excellent care (with the exception of the dr I mentioned in my post above.)  When I have a question, if I send an email, my dr will usually get back to me the same day.  If not, I call his office, and his admin ensures that he gets back to me quickly.  Again, there are inconsiderate (and pompous) doctors everywhere.  I have found a superb, caring surgeon at MSK who very carefully assesses my wants and needs and works with me in my care.

NewHere's picture
NewHere
Posts: 1043
Joined: Feb 2015

Except for one nurse, everyone has been remarkable.  Yes, they have many patients, but the doctors seem to care. As you say, doctors seem to run late.  But the facilities are comfortable enough, they have Wi-Fi and with iPads and the rest, not too bad.  It is rare that I have seen a doctor anywhere during my lifetime where there is not a wait.  

 

When I went in for my second opinion, the surgeon made sure I got all the scans and other things done right then and there before I left and had a surgery date set.  The staff, taking into account requests, schedules appointments and a couple of times I needed to change one, all I had to do was drop a message through the portal.  (As an aside I tried to get a second opinion at MD Anderson recently.  Horrific experience.  Hours on the phone repeating the same thing, after the initial intake via phone (which was good) and the transfer to next person was just to schedule an appointment if needed.  Had to repeat EVERYTHING multiple times to the same person.  Afterwards they and never responded to my inquires making sure they had my records.  Instead they dropped a note reminding me of my visit a couple of days before.  I was not going to travel and stay 3-5 days if (a) they had not received my records or (b) they reviewed the records and were in agreement that it was best for me to wait for my next scan (which is what I was told - I would not have to come in that event. ))

 

My brother and wife have both told me how the surgeons were great in the post op discussions on my two surgeries.  Additionally we were able to call in once I was home and get responses quickly at any time day or night if I had an issue.  

 

The cost of care compared to some other places was not unreasonable.  Not saying inexpensive, but not outrageous.  I have seen reports of the costs of other places in the cancer field. 

 

I was in MSK 4 days for my surgery.  It was about $50k.  I was in a local hospital over night due to dehydration where the staff did nothing.  I had to go around finding places where they had drinks and food.  That was almost $13K. 

 

Another quick aside, MSK has parking at York where the most you pay is $25.  Sometimes there is a wait, but they have that service.  They also have another parking place they work with where there is a small discount.  The places in Harrison and NJ have free parking.

 

I often do speak with the PAs and other Assistants to the doctors.  They are well trained and knowledgeable.  But when I want to speak to the doctors, I ask and I am able to do so.  Maybe not right then and there, and often when the business day is over. 

 

Recently I asked for a second opinion from my colon surgeon about what appears to be cancer in my lymph nodes where the oncologist said inoperable.  Someone from the office called and confirmed that the surgeon thought it was inoperable.  She then went on to say "call us any time, if you want to speak to the doctor, he will speak to you any time you want and if you would like to come in for an appointment, you can.

 

I am convinced that if I went with the surgeon and oncologist that the doctor who performed my colonoscopy suggested, I would not be here today.  It was as I learned more that I realized how little the surgeon new.  He did not even think of a PET scan until I mentioned it.  

 

ebugy2k you should write a letter to MSK administration and let them know the issues.  I am sure they will find certain things you mention as unacceptable as you do and would address it.  I am not sure delays in visits are that easy to fix, but the other items probably can be addressed.

PADAVE1's picture
PADAVE1
Posts: 10
Joined: Jan 2018

I moved to MSKC in July 2017 from my local ONC in PA when METs found in lund and liver - my local doctor - who I generally liked - said a bigger specialized outfit would / should learn about advancements quicker to help me - MSKC "rated" #1 in NYC area - in theory. 

I basically grew up in NYC area so big / hustle / bustle environment is common to me.  What surprised me was - most of the time MSKC scheduling SPOT On.  My doctor spent a reasonabke amount of time with me [I'm a direct talker and have lots of questions every time] and my treatments again are pretty on-time.  My Doctor's dedicated nurse reaches out to me and is very communicative - I like that.  They do like to make your appointsment automataically - but I just call and change them if not convenient.  I also utilize MSKC's new facility in Middletown NJ for treatments & scans - this gives me options [not sure all know this option exists]. 

Going to a big facility does have it's challenges - for example - I've completed 8 chemo treatments so far and have had a different nurse each time.  It's nice to meet new people - but explaining "my little story" gets tiring for sure.  My MSKC center is on 53rd lex - so I go there 90% of the time - again I think it is well run.  The hospital furter up-town is a little  less friendly for sure based on a couple of visits.  

What I think WE ALL want is reasonable answers to our questions - especially when going to a big center that sees many like patients  I'm a planner by heart - so good with coming with with unaswerable questions evidently - MSKC doesnt / can't answer them yet.  What's next for me?  What if chemo doesnt work? What's Plan B or Plan C? - "Let's take it month by month" is what I normally hear.  

RickMurtagh's picture
RickMurtagh
Posts: 584
Joined: Feb 2010

I, like several others here, have been to a few hospitals in my cancer journey.  MSKC (and my doctor - Dr. Phil Paty) has been the best experience I have had, setting MSKC so far above the other hospitals, that it is not fair to compare.  Every hospital has had some very lovely people, but everyone at MSKC was attentive, professional, and understanding.  Probably the only thing that would be a fair comparison would be; MSKC food is just as bad as every other hospital I have ever eaten at.  I don't know what it is about hospitals that the food could be made to be so unpleasant, but there you have it.

be at peace...

Rick

Mikenh's picture
Mikenh
Posts: 776
Joined: Oct 2017

I’d expect MSK to be excellent but as with all organizations, we deal with individuals and there may be an individual problem.

One minir note: the food at Brigham and Women’s was great.

Cac466
Posts: 12
Joined: Jan 2018

I’m an MSKCC patient and can not say enough great things about my caring and supportive team. I have rectal cancer with recurring nets to lungs - 4 surgeries, chemo and radiation twice.  a completely Accessible team and it helps my mental battle to know that have access to cutting edge research. They do not sugar coat things but absolutely have a supportive and caring team approach 

danker's picture
danker
Posts: 1166
Joined: Apr 2012

My internest Scheduled a  colonoscopy at our local teaching hospita. lUpon discovering my tumor the hospital assigned me a surseon and an oncologist.

The surgeon was the most caring doctor I have ever met, but the oncologist was a rael jerk.  I looked up oncologists on the hospital staff and selected three.  Upon seeing my surgeon I asked her to select one of the three.  She selected a lady doctor who was also acaring person.  Since I was paying the bills, I fired the first oncologist and hired  the lady.  I was 77 when diagnosed, and am currently soon to be 86.  I have been NED ever since the surgery cut out my tumor 8 years ago.  

We have to be our own avocate!  Best of luck to you all.  May we all become NED!!!

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