Memorial Sloan Kettering Cancer Center - Honest Review

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. 

"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 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 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. 

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 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!

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.  

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.