Memorial Sloan Kettering Cancer Center - My Experience

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

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

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 said:

Hi Kim

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  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

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 said:

I understand your feeling, abita

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

 

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.

lhduffer said:

Excellent point

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.

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.  

PhillieG said:

Hi Kim

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  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

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

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