Post Full Left Nephrectomy for Chromophobe RCC on 10/21 - doing fine, but fear Recurrence

2»

Comments

  • NanoSecond
    NanoSecond Member Posts: 653
    #22
    vfelty said:

    Hi Terri :-)

    I am back at work and also am a part-time real estate agent, and I have been so busy this week I haven't had time to log on here until now.  I am glad you are donig okay! I saw an oncologist today because I scheduled it in Sept. right after my Nephrectomy was scheduled.  I put a post up just now that discloses I have opted against genetic testing.  It turns out there is a webiste http://nomograms.mskcc.org/ that the oncologist shared with me where one can enter their variables, and get a recurrence result.  Mine was 0 - 2% chance of recurrence!! I am on cloud 9.  I think with Stage 1, like you, I wasn't in any pain and it was found on accident, therefore I thought...no biggie.  Then after the surgery, I had this strange fear about recurrence that would not leave me until today.  Going to the oncologist for a consult was the best thing for my peace of mind.  I had read that people with my subtype, Chromophobe RCC, should get genetically tested for Birt Hogg Dube syndrome.  If you don't have that subtype then it propbably wouldn't make sense.  In my post just now, I wrote all the reasons why I decided against pursuing the genetic testing.  I say focus on feeling good now and each day and that's all you can do!! Visitng with an oncologist was a good thing because I needed to know an oncologist's opinion.  Not that I didn't trust my urologist, who performed the nephrectomy, but I just needed to make sure I had all my bases covered, and now they are! We will both go on to live a long and healthy life with our one kidney, and I feel GREAT physically and mentally now that I have made it past the surgery and have resumed my normal life activities. :)  I was already eating healthy before but now I have become super strict about no red  meat and 2 liters of water a day combined with walking 2+ miles per day.  So far so good! I love this forum because, like you stated, I have learned so much.  I feel like now I need to pay it forward and post things that may be helpful to someone who is pre-nephrectomy and hopefully put them at ease and let them know, everything will be alright!!!:)  Stay positive and no need to worry about recurrence.  It is a waste of time.  Just focus on feeling good each day and don't miss your 6 month scans, and we will both be fine! :) 

    Healthy diet

    Vfelty.  That is wonderful news indeed.  However, if you are serious about eating healthy you first need to understand what that means.  Giving up all red meat is, for lack of a better term, just a red herring.  If that red meat comes from a pastured grass-fed animal it should perfectly healthy to consume.  All the studies that claim to show an correlation to cancer turn out to be flawed. That is for two reasons.  First: Correlation is NOT causation.  Second:  These studies always lump together processed meats (which likely are cancer-causing) along with healthy meats.

    Regardless, if all you are doing is just giving up red meat you are still at risk of consuming far too much (and the wrong kind) of the number one macronutrient that can contribute to the proliferation of all types of cancer - carbohydrates:

    http://www.youtube.com/watch?v=PV3UnNvN3NI&feature=youtu.be

    http://www.youtube.com/watch?v=ceFyF9px20Y

  • gingersnaps
    gingersnaps Member Posts: 67 Member
    #23
    great news v

    So glad to hear how great the appointment went. The recurrence rates were just about what we were told at Cleveland. After I read over your first post I realized you had a full not a partial. My son only lost 15 percent of his kidney.  Did the oncologist talk at all on the grade?  This is the first time he is waiting a year between scans.  He eats a lot less junk and works out a couple times a week,no exercise at work,computer Tec.  It will be a lot easier for to get back to normal and try to put this in the back of your mind. 

  • I am alive
    I am alive Member Posts: 315
    #24
    Life is good

    I'm so happy for you!! Now go out there and make every single day joyful!!! Someone's going to have a GREAT holiday season!!

  • grnsammy09
    grnsammy09 Member Posts: 20
    #25
    vfelty said:

    Genetic Testing

    Congrats on being 2 months out from your nephrectomy! Did your urologist or oncologist order the genetic testing?  I asked my urologist about this the day after my nephrectomy and he said they could do the Von Hippel Lindau test (blood test) but that (his practice) didn't do the other genetic testing for Birt Hogg Dube.  He made it seem like no one had ever asked for that, ever! I called his office last week to learn the results of the test and his medical asst. told me that all she could see was that there was a miscellaneous blood test done and she had no results.  I asked her to ask the dr. to call me and a whole week went by, argh! I guess to know anything I have to make an appt. and will do that on Monday, but meantime I am hoping the oncologist will be more knowledgable and wanting to know why my ChRCC decided to present itself in me at a relatively young age too (okay, I am 10 years older than you, but still younger than the average person who gets it, which I was told/have read is in their late 40's/early 50's).   So, good luck on your test results too and please share back what you find out! :) 

    The Oncologist

    My oncologist brought up the genetic testing. I havent seen my urologist/surgeon since I was in the hospital! But I will see them both on a 6 month basis, as they are in the same office in Philadelphia, which is nice!!! Good luck to you too and I will definitely share what I find out!

  • angec
    angec Member Posts: 924 Member
    #26
    vfelty said:

    Hi Terri :-)

    I am back at work and also am a part-time real estate agent, and I have been so busy this week I haven't had time to log on here until now.  I am glad you are donig okay! I saw an oncologist today because I scheduled it in Sept. right after my Nephrectomy was scheduled.  I put a post up just now that discloses I have opted against genetic testing.  It turns out there is a webiste http://nomograms.mskcc.org/ that the oncologist shared with me where one can enter their variables, and get a recurrence result.  Mine was 0 - 2% chance of recurrence!! I am on cloud 9.  I think with Stage 1, like you, I wasn't in any pain and it was found on accident, therefore I thought...no biggie.  Then after the surgery, I had this strange fear about recurrence that would not leave me until today.  Going to the oncologist for a consult was the best thing for my peace of mind.  I had read that people with my subtype, Chromophobe RCC, should get genetically tested for Birt Hogg Dube syndrome.  If you don't have that subtype then it propbably wouldn't make sense.  In my post just now, I wrote all the reasons why I decided against pursuing the genetic testing.  I say focus on feeling good now and each day and that's all you can do!! Visitng with an oncologist was a good thing because I needed to know an oncologist's opinion.  Not that I didn't trust my urologist, who performed the nephrectomy, but I just needed to make sure I had all my bases covered, and now they are! We will both go on to live a long and healthy life with our one kidney, and I feel GREAT physically and mentally now that I have made it past the surgery and have resumed my normal life activities. :)  I was already eating healthy before but now I have become super strict about no red  meat and 2 liters of water a day combined with walking 2+ miles per day.  So far so good! I love this forum because, like you stated, I have learned so much.  I feel like now I need to pay it forward and post things that may be helpful to someone who is pre-nephrectomy and hopefully put them at ease and let them know, everything will be alright!!!:)  Stay positive and no need to worry about recurrence.  It is a waste of time.  Just focus on feeling good each day and don't miss your 6 month scans, and we will both be fine! :) 

    Oh, by the way Vfelty.. you

    Oh, by the way Vfelty.. you look very familar. Are you in Brooklyn by any chance? I know i have seen your pic somewhere... lol

Discussion Boards