NED & unexpected problem

dhs1963
dhs1963 Member Posts: 513
in Kidney Cancer #1

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.

Comments

  • foxhd
    foxhd Member Posts: 3,181 Member
    #2
    Now

    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
    dhs1963 Member Posts: 513
    #3
    foxhd said:

    Now

    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!

    Control is good

    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
    foxhd Member Posts: 3,181 Member
    #4
    dhs1963 said:

    Control is good

    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.

     

    Dr. Shuch

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

  • dhs1963
    dhs1963 Member Posts: 513
    #5
    Upon reflection, all is good

    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
    one putt Member Posts: 72
    #6
    dhs1963 said:

    Upon reflection, all is good

    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.

    new doc

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

  • dhs1963
    dhs1963 Member Posts: 513
    #7
    one putt said:

    new doc

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

    The intake people said....

    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 metastitsised 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
    dhs1963 Member Posts: 513
    #8
    one putt said:

    new doc

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

    I spoke with someone else....consult with Dr HAMMERS

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

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #9
    dhs1963 said:

    I spoke with someone else....consult with Dr HAMMERS

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

    Happy for you DHS! What a

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

     

    Jojo

  • one putt
    one putt Member Posts: 72
    #10
    dhs1963 said:

    I spoke with someone else....consult with Dr HAMMERS

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

    feb 20

    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
    dhs1963 Member Posts: 513
    #11
    one putt said:

    feb 20

    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.

    Appt

    Appointment is at 8:00 am

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