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NED & unexpected problem

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

I got my results of the lasts (and last) quarterly scans:  NED.  I say last, as they want to stretch out to 4 months.  Funny thing is the MRI report said, rather then NED, No Definite Evidence of Metastatic Disease.

The problem is I had been having my care through NIH's familial RCC protocol.  Now, I am kicked out, and have to find a new oncologist.  Any suggestions for the DC area?  I am thinking someone at Hopkins.  Maybe I will interview two or three.

foxhd's picture
foxhd
Posts: 2213
Joined: Oct 2011

You gain more control. Think it out. Take your time and find the doc that you are in agreement with. How cool is NED? Awesome!

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

I was happy with my Doctors.  If they told me that at one year of NED, I would not have been shocked.  But, the problem, I think is budget related. And NIH is going to focus on the people with active cancer.  My survailiance adds no research value to them at the moment.

 

I have reached out to one of the Dr.'s in your neck of the woods:  I don't know if you have seen Dr. Shuch at Yale, but he was one of the Fellows that I saw at NIH last year, and seemed to really understand my disease.

 

foxhd's picture
foxhd
Posts: 2213
Joined: Oct 2011

I'm not familiar with him. Sznol and Kluger are the ones I see.

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

After getting over the initial shock of needing to find a new cancer team, I realized it might be better.  I spent an 40 minutes with my PCP on friday, and we went over everything.  We had not really dealt with the cancer issues before -- only most superficially, as I switched to her after the cancer diagnosis (and two major mistakes by my prior primary care doctor -- one, minimizing the concern of kidney cancer, when my father and grandfather had it.  I wanted to be screened 3 years before diagnosis.  The second error was diagnosis angina as GERD. My PCP was proactive.  I think it will work out ok.

And I would rather have to find new doctors than have active disease.

one putt
Posts: 72
Joined: Sep 2012

I see Dr. Hans Hammers at Hopkins. His area of expertise is RCC and he's a great guy.

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

When I spoke to the intake people, I was told Dr. Hammers only sees people with active disease.  Since I am NED (even though I am one year out of stage iv grade 4 sarcomitoid (e.g., already metas****ised and agressive), the intake person said Dr. Hammers will not see me.  On the otherhand, from SmartPatients, someone spoke with Dr. Hammers...and he may be willing to see me.

With that said, I need someone to agressively follow me; I need Dr. Hammers or similar  expertese when there is a recurrance.  If someone else can follow me as throughly, that would probably be ok.  I do not want to waste a top Doctors time if the disease never returns...

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

I have a consult with Dr hammers on Feb 20th.  Thank you for the suggestion.

Jojo61's picture
Jojo61
Posts: 763
Joined: Oct 2013

Happy for you DHS! What a wonderful network there is here on CSN and SP

 

Jojo

one putt
Posts: 72
Joined: Sep 2012

Alice and I will be at Hopkins for a follow up with dr Hammers on Feb 20. What time is your appointment ? We'd really like to meet you.

dhs1963's picture
dhs1963
Posts: 424
Joined: May 2012

Appointment is at 8:00 am

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