Memorial Sloan Kettering Cancer Center - Honest Review

mom_2_3 said:

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.  

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".

mom_2_3 said:

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.  

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.

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 said:

MSKC

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

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.

debugy2k said:

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.  

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 said:

I'm saying exactly what have

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.  

“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. 

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. 

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.

Choose Extraordinary said:

Looking for recommendations

mom_2_3, would you be willing to please share your teams names with me?  Or the Oncologist you loved so much?  I'm really trying to find the right team.  Thak you for considering. 

Hello and welcome to the group.  This post is really old.  It would be wonderful if you could introduce yourself, give a little bit of background and proceed with your question. This is in the middle of an old thread and will probably be missed by most of our group members.  You have joined a wonderful board, and we can help you with most of your concerns.

Kim

Debuggy: I'm so sorry for your experience with the hospital. I know you are relating your experience as a caregiver I thought I'd relate my as both a caregiver and as a patient. I'll give a little bit of my medical history since my patient experience with MSK has been so new. 

In Oct 2009 I was diagnosed with Stage IIIC colon cancer by my local GI doctor. At the time my wife and I were caring for a disabled parent so the thought of traveling 2+ hours to Manhatten for a medical consult and treatment just seemed out of the question. Although I do remember concerned friends pleasing with me to consider MSK given my Staging. At the time there wasn't a real cancer center in our local hospital. However I aligned myself up with a recommended local surgeon and an Onoclogist . I had a left hemi colectomy and recovery was rough and painful. I spent 8 days in the local hospital, cathedere, N-tube... gradually getting toward solid food and a solid stool. I went home for 3 weeks of bedrest and met with the Oncologist. She recommended 12 rounds of Folfox 6 starting immediately. I remember she was terse and to the point. However she was not forthcoming with information. I had to ask her many details regarding treatments. She wouldn't offer. Even the question of my wife and mine family planning (my wife was prepping for IVF at the time I was diagnosed) I remember the conversation going something like this:

Me: "I'm wondering whether I should bank my sperm?"

Doctor: I wouldn't recommend it. I would recommend waiting at least 5 years before trying to have kids. 

Me: "Oh... is that because chemo will cause birth defects"

Doctor: "No... but you might want to consider whether to bring a child into this world if you might not be here in 5 years" ugh

Around my 9 round my feet felt wet all of the time. I asked my Oncologist if it was a side effect of the chemo. She informed me it was neuropathy... actual nerve damage which may never heal (to date it has made an improvement, but I still have 50%). I made it through 12 roughs but she never talked about the lasting damage, compromise to my immune system... feelings of depression afterward. Shortly after I finished treatment she had a business dispute with the practice and abruptly left and accepted a job 100 miles away. She left no notice, no letter, n information for her patients past and present. It was the most unprofessional thing I've ever experienced in healthcare. She resigned on Friday and never returned. I was paired up with the Primary Partner Oncologist for followups. His case load was enormous and the waiting time to see him exceeded sometimes 3 hours. I remember having to leave and rebook appointments. But I expected this. I understood this. I live beyond the suburbs of NYC in upstate NY (mid-Hudson valley) and the quality of specialized health care always trailed NYC. The advice and treatements seem 10-15 years behind what MSK and other Cancer Centers offered. 

My first experience with MSKCC was when my wife discovered she had breast cancer in 2015. It was low staging... a lumpectomy, 8 weeks of low radiation and 10 years of tomixiphen. What amazed me was the level of care she received. Her surgeon and Onocolgist were both caring, informative, gave her the full 15-30 mins of face to face consult. She sees a RN now for follow ups but she was seeing her surgeon for 1 year after surgery. They schedule scans in advance but it's easy to reschedule. My wife goes to the Harrison Westchester facility for most everything (1:hr 15 mins away) and she's had some long wait times but they've always communicated with her... tried to make her comfortable and she's just there for followups. I've gone to several of these appointments. So when my mother was rediagnosed in 2019 with colon cancer there was no question where she was going. She had a stage 1 tumor which they expertly resectioned her. She spent just 3 days in the hospital post surgery... everything done lapro using a robot. Her surgeon was amazing! Her nurses were great. Although my mother had to share a room I was really amazed with the quality of the nurses and PCT's I have to say even the hospital food wasn't terrible. So again... when I was rediagnosed 4 months later.... where do you think I chose?

I met my surgeon on Aug 9th... After several scans and blood tests we scheduled surgery in early October. Yes, the trips to Manhatten are tough (2 1/2 hours door to door) but when I arrive I'm usually seen on schedule. My appointments are consolidated... however that is because I call the schedulers to do so. Instead of seeing my surgeon on Friday and Hematologist on Tuesday I call to have them schedule everything the same day. My surgery was amazing and what I consider the best recovery I've ever had. My nurses were great and my PCT's were terrific. I'm not saying this as a blind statement not having a previous point of reference. My local hospital was terrible with care. Waiting for pain meds... waiting for scans. My only negative experience at MSKCC was waiting an hour in a wheel chair for transport to take me back to my room. The staff on my floor was just terrific (Gastro surgery). I spent 16 days in recovery... my surgeon was keeping me due to the complexity of the recovery... and I returned 3 weeks later for a small bowel obstruction). In all cases my doctors were informative and engaged. If I asked any questions they were more than willing to explain. My reports arrive quickly on my portal account and I've gotten responses on questions through the portal in a timely manner. It is not a perfect experience... but one I feel confident about. My ocologist has me on immunotherapy... something that would not be offered by local oncologists. She explained exactly what my diagnosis is, the challenges I face and why this therapy is better suited for me rather than chemo. She was direct, detailed and made sure I understood everything. 

Again... in regards to the OP I feel horrible that your experience as a caregiver was negative. I can only speak to the positives as a patient. 

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

I want to address the 'parking' comment. I've worked in Manhatten for 25 years. An Average midtown parking garage can charge $50 for 1 hour and $80-100 for 24 hours. MSKCC subsidizes their parking. The most I ever paid for 24 hours was $36. In fact I left my car in the 66th st parking garage for the duration of my surgical stay. We drove down the day before expecting me to be in the hospital at most 5 days. Instead because of complications it turned into 16. When they discharged me I sent my wife to the garage with my credit card expecting the bill to be over $1200. For 2 weeks the total charge came to $420. Where else can you park in NYC with Valet service for two weeks at that rate?

CONS -

1) You're just a number- I disagree... in fact my chart and care is very personalized. Each new diagnosis is consulted by the committee... several doctors who review your case along with your primary physicians. I was told that my diagnosis was a little controversial... in other words, some doctors disagreed with my staging. 

2) They bill the insurance companies over double the local hospital and they can get away with it.

I'm am sure they bill more than local hospitals do... I know the expense of running a city in NYC is exorbitant. One thing I can attest to.... thought out my wife's care our insurance company settled several times with MSKCC in regards to what they would pay. I remember seeing a statement showing we were responsible for covering the difference to Sloan for more than $11,000. We never once received a bill from MSK. Hospitals bill all of the time for services and the insurance companies will always negotiate a percentage of payment. One thing I can compare is the cost of lab work and scans at MSK versus local imaging centers. The billing by MSKCC for a CT Scan came to $965. Our local imaging center charged my insurance $2735 for the same scan. As patients we shouldn't have to worry about the behind the scene costs imposed by our care, but I have never seen any extra billing that was not run direct thru my insurance.  

3) They don't give a rats a$$ about you-Again... opinions vary... In the past decade I've spent 67 overnights in various hospitals as a result of my cancer. As a patient I can say that I've never gotten greater care anywhere than MSKCC. The nurses, doctors, PA's even the people that bring the food all are there to cater to your health improvement. 

4) Auto-scheduling like everyone has nothing better to do with their lives

Auto-scheduling is based by the doctor or personnel's schedule trying to balance more than 60-80 patients per week. I understand the case load... frankly I'm amazed how they do it. I never feel slighted if they autoschedule me. I expect it. And I tell them if there is a conflict and they work to schedule around it.  

5) You'll probably get more love and advice from your Starbucks barista: Well if you are looking for love and advice for trying to save a life from a barista... you are looking at the wrong place. I don't personally the staff you dealt with... and it's completely reasonable to believe that some didn't have a good bedside manner. But these people are in business to save lives... when other hospitals can't.

I will say that I've had a good friend who passed away who was advanced stage IV and tried to get a consult with them after treatments fail with local doctors and oncologists. After reviewing the progression of her diesease she was told there was simply no treatment available. She was terminal. She passed away 4 months later. It seems harsh to receive that news from  a specialty hospital that was reviewing a terminal patient for a 2nd opinion (she was diagnosed 30 months prior) but she wasn't a patient of MSKCC. Perhaps if she had become a patient from first onset of diagnosis that would have had better options for treatment.

6) They love wasting your time: This is time-consuming. I work full time and my wife and I still care for a parent who is in endstage of MS who lives with us. I have travel anxiety for days before an appointment... what time to leave... should I drive or take the train? Will there be traffic? What time will I get home? Living nearly 3 hours away from my primary source of treatment is not convenient by any means. But I've entrusted in these professionals to save my life. And that's exactly what they are attempting to do. What's 2 hours on a train if they can extend me 10-20 more years. 

Again... I appreciate and empathize your experience as a caregiver. As a patient I can only speak toward the great care, consult and positive energy I've received from the professionals I've engaged with. I feel extremely lucky to have this care at this junction in my life.