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Memorial Sloan Kettering Cancer Center - My Experience

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

On December 29, 2017, a member of this forum posted their "honest review" of their experience at MSKCC. As someone who strongly believes I would not be here if I hadn't gone to MSKCC, I found the original post to be disturbing to say the least. While not everyone has good experiences at every hospital, I found that some of the replies to be very troubling. I saw that some members of this forum who were thinking of going to MSKCC had decided to not bother going after reading that person's post.

While I would never say that if someone does not go to MSKCC, they are doomed, nor would I ever say that if you went to MSKCC you'll be saved, the "honest review" was frightfully misleading. Perhaps My Experience would have been more a more accurate title? My oncologist, Dr. Nancy Kemeny, has a 65% 10-year survival rate among her stage IV colon cancer patients. During my 14 years under Dr. Kemeny's care, I've experienced highly professional care from the entire staff 100% of the time. If you're looking for a Chatty Cathy Cheerleader, you're at the wrong facility. If you're looking for a highly skilled staff of professionals, then I highly recommend that you go there for treatment or a second opinion.

There was a period early on where MSKCC was not in my network so I paid out of pocket to see Dr. Kemeny, then went to Hackensack Hospital/Cancer Center and had Dr. Andrew Jennis follow the protocol Dr. Kemeny suggested. As it turned out, Dr. Jennis was in agreement 100% with her approach. My first oncologist, who was my PCP (Primary Care Physician) I had been seeing for many years for annual checkups, missed diagnosing me and when it was caught, he gave me less than 1 year to live. He was in no hurry to start my treatment either. Here I am, 14 years later, still receiving treatment but my overall quality of life is pretty darn good.

My hope is that when someone shares an experience, that they call is that. An experience. I really hope people weren't turned away by the other post.
To the original author, I would suggest that you try your luck at Hackensack since MSKCC didn't meet your standards.
Best to all,
-phil

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

Phil it's great to see your post.  I've been wondering about you since I've not seen you here in a long time.  I'm glad that you are doing so well.  Always remembered that you loved kayaking and guitars and wondering if you are still doing that.  Good that Sloan Kettering served you well.  There are always going to be good/bad reviews with the same place/doctor.  It always depends on the person's attitude moving forward and/or dealing with the situation.  Great to see you again.  Wishing you well.

Kim

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm doing well. I'm still receiving treatment for 2 lung mets but it's keeping them stable. Today marks 14 years since my diagnosis. Not too shabby since my original oncologist gave me less than 1 year to live. I agree that any facility is going to have some great reviews and some horrible reviews. I did bring up the post up to my oncology nurse and she had a very similar reaction and response that I had. Unbelievable that any Dr. there would say something like that to a patient (not to mention that it's not what typically happens after liver surgery). I've cut way back on my involvement on this forum. I seem to have a knack for ending comments on posts Wink plus the needs of stage IV colon cancer patients are much different than those of other stages. I'm more involved with helping newbies on a stage IV group navigate the process.

I'm still playing guitar and getting ready to do some kayaking. The ice is gone from the lakes (for now) and they're calling for warm weather this week. I also started a real estate photography business almost a year ago and that is keeping me busy and generating some much-needed income.

It's great to see that you're still here!
-phil

abita's picture
abita
Posts: 832
Joined: Dec 2017

I have cut back a bit too since that post about the liver surgery which was right before my liver resection. When I first joined, this forum gave me hope. Now I feel that there is a lot to scare me here. I have a positive outlook for my recovery and I need positivity. I know that sounds lame, but I am doing well, and I think it is from having excellent doctors and keeping my spirits up. And prayers.

Trubrit's picture
Trubrit
Posts: 5225
Joined: Jan 2013

The CRC forum is smaller now, with fewer members; but only a few years ago, the forum was busy. Sadly busy has its drawbacks. We had three or more members passing away each month, one week we had three alone. We had allot of forum members who left at that point, as it is emotionally hard to deal with death, even with members on a forum whom we have never met. 

On the whole this is a positive forum, but we HAVE to deal with death, as it will come to pass for many of us.  The key for those of us who continue to post on the forum is to accept death; others and evenutally our own; and move forward with the knowledge we have gained over the years, so that we can help those who are entering the forum.

I am glad that you have good Doctors, to keep your spirits up, and family members.

Tru

 

abita's picture
abita
Posts: 832
Joined: Dec 2017

I know it is part of it but that is why I have pulled back. Even bfore my diagnosis, I knew that we will all pass one day. But I didn't focus on it. It helps me emotionally to hear about the survivors and hearing that my travails are the same as others. However, it really makes it hard hearing about all the people that don't make it. The same as why I don't google and read about stats. There is a lot that has helped me on this forum. I prefer to focus on living for as long as I can.

beaumontdave's picture
beaumontdave
Posts: 1077
Joined: Aug 2013

I think you're exactly right Tru, "momento mori" is at the heart of Stoicism, and it's simply to remember you will die, and so live accordingly. That outlook helps me want to be here for others, especially the new, terrified ones. It's also allowed me to be there for my father a year ago January, for my brother in-law before Christmas, and an old, dear friend these last few weeks, all needing help to a peaceful ending. I don't know that I'm yet fully at peace with my own mortality, or even close, but I do know that I've come a long way. Now my mother is diminishing cognitively, and has hip and leg pain, similar to sciatica, but debilitating enough that she can't be alone. She's 85 and has rebounded a bit, but now her three children and some other family is with her 24/7 at her home. It's sad to see her dependent after a life of giving and caring for others, but it's also neat to take the time to sit and talk, or play gin rummy with her for hours, things I once wouldn't have taken the time to do[Holiday stuff and taking her to dinner not withstanding]. However it all plays out, I know I'll cope with the reality I'm given.  Sorry for going off topic, but I needed to get that out................................................Dave

beaumontdave's picture
beaumontdave
Posts: 1077
Joined: Aug 2013

Ever reread what you write and cringe? That's me a fair share of the time..........................Dave 

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

Love your picture and great that you are going to get out to do some kayaking again.  You were always a great photographer by the pictures you posted many years ago.  Keep doing what you're doing.  Once again, so good to see your posts.

Kim

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

If I had not gone to Sloan Kettering, I would not be here.  Mine is a very rare colorectal cancer - Appendix Cancer - and needed a specialist of the type that are very few and far between (maybe a dozen in the entire US).  The colorectal group at MSK has those specialists, and the care I received and continue to receive there is excellent.  Is it perfect in every way?  No.  But you are not going to find "perfection" (whatever that is) anywhere.  Here I am, at almost 11 years out, with a Stage 4 colorectal cancer diagnosis, after being told by other colorectal specialists that I had a maximum of 5 years.

Next appointments/scans at MSK in May.  I'll be going for the rest of my life.  (I'm not cured, but living a full, normal life.)

Alice

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

If life were perfect we wouldn't have cancer... ~me

Like you, I'm a lifer and I'm OK with that. I'm glad to hear that you are doing well. Maybe I'll see you in May?
-phil

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

Due to pain where the growth is, I'm having my MRI next week (Sunday) at MSK.  Don't know when my follow-up with Dr. Paty will be yet.

However, when our ice goes out, I'll be back on the water in my kayak here!  Come on up!

Alice

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

Message me Alice and when it gets a bit warmer, let's paddle Smile

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I think you make a great point Phil. And it would be a terrible shame if someone were to not go there based on one person's opinion. 

Not an exact comparison but my original onc that ignored the blood clots I was getting until I almost died from a PE gets rave reviews on line. The onc I see now gets so-so reviews. But she's been fabulous with me and I feel she's very proactive and honest. My surgeon also gets so-so reviews because people think he's arrogant. I felt he was confident and I like that he explains things without totally dumbing it down and is straight with me. My first onc was a quiet, not very forthright personality and I didn't like it at all.

I don't need hand holding and niceties. I need someone who is going to do their best to help me as much as is possible. But I can see how some people prefer the solicitous types.

Jan

 

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

"I need someone who is going to do their best to help me as much as is possible." My sentiments exactly!
I don't need warm and fuzzy from my oncologist or surgeons. I only want them for their smarts ;-)
The nurses provide the warm and fuzzy.
-phil

lhduffer
Posts: 86
Joined: Oct 2015

So glad to see your post about "your experience".  I go to the major cancer center in Florida and feel so fortunate to have been able to do so.  Did I have long waits at times...absolutely.  However, I also had some of the best doctors (I think mine were amazing) and research there is.  My husband's gastroenterologist told my husband that at times I may feel like a number, but if I wanted the best chance of survival that is where I belonged.  He also said if I was looking for someone to cater to me then I should probably go somewhere else.

However, I always felt my doctors really cared about me and my case.  Unfortunately, cancer is very prevalent and, therefore, cancer centers are very busy.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

There's a reason for long waits at some cancer centers. It probably has something to do with them usually being very good! There were a few times at the beginning of my journey that I got a bit annoyed at the waiting times, then I realized that MSKCC was making room for other patients like me who were either seeking a second opinion or needed to be cared for before me for whatever reason. Once I looked at it that way (and started making very early appointments to avoid the busy times) things went much more smoothly. I would have hated to be turned away because they had too many patients.

I'm glad that you are happy with your doctors! There are plenty of them out there at different facilities who are top-notch.
I wish you the best!
-phil

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

My dr (at MSK) does not limit his time with his patients to the MSK-set appointment time.  If we need more than 15 minutes, he stays until we, the patients, get the information and support we need.  Thus I know he ALWAYS runs very late, and I do my best to get first appointment of the day.  Otherwise, bring a couple of books, and settle in.  Fortunately, their waiting rooms are very comfortable.

MSK determines the scheduling;  my dr won't be held within those time constraints.  If I'm waiting, it's because he's helping someone else.  Someone else waits while he helps me.  

Helen321's picture
Helen321
Posts: 1409
Joined: May 2012

I had a terrible experience at Memorial Sloan Kettering.  I was just a number, was over treated, was treated so badly after my surgery that I'm still angry about it 5 years later.  I reacted badly to the anesthesia from surgery.  They labeled me with a nickname, and when I was crying told me that surgery hurts and to stop crying.  I slept for a whole night without a sheet on my bed as revenge?  I don't even know why I had no sheet on my bed but I was in no shape to deal with it and they sent my family home.  My daughter wanted to stay and they insisted she leave so I woke up at 4 in the morning with a permanent ostomy at 42 alone and hysterical.   I would never not recommend the place because there aren't many choices but I'm not going to sing their praises either.  If you don't pay attention, you won't survive.  You have to be your own advocate and you have to know what you're talking about.  My mistake was not understanding my own body.  I just didn't have the knowledge that I have now and I paid a dear price for it.  It was so bad that when I went in for a temporary ostomy, the came out and told my sister that they could either wake me up or take the anus.  Who does that?  My sister said the way it was presented to her was, we've already got her under and a whole room full of people working.  Okay but this is my anus!!!!!!!!!!!  So my sister made a choice for me under pressure that I NEVER would have said yes to.  I made her my proxy in case I was dying, not so she could alter my body without my permission.  So now I'm stuck with a deformed body so that "a room full of people and hey she's under anyway" didn't cause anyone else disturbance.  I'm glad you had a good experience at that hospital, but not everyone does.  I think they are overrated.  Again, would I say don't go there.  No.  If you have stage IV cancer, it's better to go to a cancer hospital than a regular hospital with a cancer ward. You stand more of a chance at Memorial than LIJ.  Would I say don't go to another Cancer hospital in another state, No.  Just make sure it's a cancer hospital.  Never choose a regular hospital over a group of specialists in the field.  They're since changed their surgery rules about removing body parts without patient consent because of my complaint.  A family member can no longer authorize major surgery if the patient is able to do so by being woken up.

PhillieG's picture
PhillieG
Posts: 4907
Joined: May 2005

I'm sorry to hear about your experience there. No place is perfect. One thing that everyone should remember no matter where they go for treatment is that it is partly our responsibility to be our own advocate and ask questions. I was fortunate to have my brother help me navigate the whole process. We'd come up with questions beforehand and then I/we'd ask them, get answers, and take notes. It sounds like your sister may have dropped the ball as far as approving the operation on your anus. 

debugy2k's picture
debugy2k
Posts: 85
Joined: Oct 2017

@Helen321 - I know how you feel.  My mom had a terrible experience there as well.  

jontaejones
Posts: 8
Joined: Oct 2017

My girlfriend has late stage Ovarian Cancer and got surgery and first line chemo at MSK. So, I'll first say that I do not have cancer and am posting under that perspective.

 

They have world class surgeons and probably have by default the best surgeons in the world for cancer/debulking.

 

So, that is where you want to go for debulking.

 

OTOH, I felt the chemo treatments were very impersonal and uncompassionate, though the facilities are amazing. Weeks of chemo were skipped and one oncologist 'bailed' on his patients. I'll just leave it at that.

 

I feel you have to be your own doctor there, which kind of defeats part of the purpose of having an oncologist. If cancer popped its unfortunate head up again, and either I, or another loved one got cancer, I would tell them/myself to do the surgery at MSK, but do the chemo elsewhere.

 

It seems to me the delivery of the chemo drugs and the regimen for most common cancers are pretty standard. And I do think a smaller hospital or even clinic would have provided more of a 'cheerleader' atmosphere as it was mentioned. Yes, you don't want that during surgery, but that kind of attention during chemo and lower doctor to patient ratio I think is more important during treatment. 

 

 

Kazenmax's picture
Kazenmax
Posts: 424
Joined: Feb 2016

My experience was different. I had my surgery at Baltimore Mercy Hospital. It's a huge facility about 2 hours from my home. The care I got there was outstanding. My oncologist is local and very impersonal. I get my 10 minutes with him and no more. 

That being said, I believe his standoffishness is part self protecting and part no bedside manner. He comes highly recommended. 

I think with any health issue, you have to be your own advocate. It's too easy to get lost in the medical machine. I'm very lucky to have support from my family. 

I'm sorry for your awful experience. It's terrible that when you are ill, you can't depend on your health care provider.

Kazenmax's picture
Kazenmax
Posts: 424
Joined: Feb 2016

Ugh. I don't know how this got posted twice. . And there no delete button 

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

I'm in the midst of a new concern (pain where my cancer is) and MSK got me in quickly for a scan and an appointment with my dr.  I have an MRI on Sunday, and will review it and be examined by my dr on Monday - they've been very responsive.

Alice

Trubrit's picture
Trubrit
Posts: 5225
Joined: Jan 2013

very happy to hear they got you in so quickly. 

- apologize for all lower case. typing with a broken wrist hurts, so i'm minimizing buttons/keys. -

Tru

abrub's picture
abrub
Posts: 2132
Joined: Mar 2010

Something good came up, and I have to reschedule.  I probably won't go down for 2 weeks.  

I hope you're feeling better, Tru.

Alice

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

When you have a new concern and they can get you in that fast that is wonderful.  Wishing you all the best. Please let us know how you are doing.  You've always been so supportive on this board and always followed your posts.

Hugs!  Kim

danker
Posts: 1256
Joined: Apr 2012

Yes. you do have to be your own avocate.  The hospital where I got my initial colonoscopy assigned me a surgeon and an 

oncologist.  The surgeon was the most caring Dr. I have ever met.  The oncologist was a jerk.  So I fired him!!  Looking up oncologists at the hospital. I selected three and asked the surgeon to refer one of them ffor me.  She gave me a lady Dr. that I was happy with for the 7 yrs. she treated me.  I have been NED ever since the two lady Drs.  took care of me in 2010. 

Good luck to all,may we all be NED!!!

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