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Accessing Sloan Kettering Late Effects Clinic

viola43
Posts: 16
Joined: Aug 2011

Hi,
I've read many positive posts about the Late Effects Clinic at Sloan Kettering. I am experiencing neck and shoulder weakness and have been told this is related to mantle radiation treatment for HD which I had many years ago. I am interested in finding out more about the program at SK and the best way to arrange to be seen. I have called several times and am always told to send my records first. I have requested to speak to a coordinator but this is impossible until I send my records. I guess it is the chicken and egg problem. As you know, getting together years of records can be a big commitment time wise and financially, so I am trying to get more information before I do that to see if it would be worth my while. Maybe those of you familiar with the clinic can help. Here are my questions: How many days is one expected to stay to go through the process? Do they automatically perform more scans and other tests such as EMG, even if you already have had recent tests? Are you seen by a comprehensive team such as cardiology, G.I., PT, and more, even if you don't have symptoms? What is included in the evaluation and treatment? Is insurance checked ahead of time by them? Last, does Sloan Kettering offer so much more than another great hospital to make it worth while to trek a great distance? These are lots of questions, but if anyone who has been through the process at SK and is willing to share information, I would really appreciate it.
Thanks, Viola

catwink22's picture
catwink22
Posts: 239
Joined: Sep 2009

Hi Viola,
I'm sorry I don't have any answers to your questions, but I thought you might want to also post this in "Other Discussions" under "Long Term Effects of Treatment". I wasn't sure if you knew about that discussion board, it's easy to miss if you don't scroll down. I'm sure there are lots of people who might have the answers you are looking for that might not see your post here and I wouldn't want you to miss out on any helpful information. We certainly need all the help we can get fighting our battles! Good Luck to you!
Cat

viola43
Posts: 16
Joined: Aug 2011

Hi Cat,
Thanks for your great suggestions about scrolling down to see "other discussions." You are right, I did not see that and it will be a good place to post. Thanks again. Viola

viola43
Posts: 16
Joined: Aug 2011

Hi Cat,
Thanks for your great suggestions about scrolling down to see "other discussions." You are right, I did not see that and it will be a good place to post. Thanks again. Viola

viola43
Posts: 16
Joined: Aug 2011

Hi Cat,
Thanks for your great suggestions about scrolling down to see "other discussions." You are right, I did not see that and it will be a good place to post. Thanks again. Viola

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Viola,

I'm a patient at the clinic. I'll send you a message later tonight to answer your questions, the best I can!

Cathy
HD 1989, 1994
IDC 2007

viola43
Posts: 16
Joined: Aug 2011

Hi Cathy,
Thank you for your off line comments. I wasn't aware that was possible and I wonder if you could tell me how to send (and retrieve) a private comment. Your email disappeared after I read it.

Thanks,
Viola

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