So upset

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Jobie123
Jobie123 Member Posts: 32 Member
in Kidney Cancer #1

So looking for people to give me more positive stories ! My kidney cancer was T3a NO MO and I had a radical nephrectomy, just had a chest X-ray on a 4mm lung nodule to check for growth ! I had a private message yesterday from a lady saying basically with your pathology report you’ll be lucky if you get 2 years remission ! I’m not sure statistically if this is true but would love some positive stories x

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Comments

  • Steve.Adam
    Steve.Adam CSN Member Posts: 463 Member
    #2
    Hi again Jo

    My story is very positive, but it is a Stage 1 story so maybe not what you want to hear.

    But you must understand that everyone here is afraid of recurrance, even lucky Stage 1s like me.  For that reason we tend to be cautious in our optimism.  Cautious optimism is not pessimism.

    Everyone's story is different. Their future is not your future. You are living your own life and meeting your own destiny.

    We can only do our best with the situation we find ourselves in.

    That's all anyone can do.

    Steve.

  • Jobie123
    Jobie123 Member Posts: 32 Member
    edited January 2018 #3
    Steve.Adam said:

    Hi again Jo

    My story is very positive, but it is a Stage 1 story so maybe not what you want to hear.

    But you must understand that everyone here is afraid of recurrance, even lucky Stage 1s like me.  For that reason we tend to be cautious in our optimism.  Cautious optimism is not pessimism.

    Everyone's story is different. Their future is not your future. You are living your own life and meeting your own destiny.

    We can only do our best with the situation we find ourselves in.

    That's all anyone can do.

    Steve.

    Hi thanks for the reply means

    Hi thanks for the reply means a lot x

  • CRashster
    CRashster Member Posts: 241 Member
    #4
    in my opinion

    She never should have said that. No one can tell you that.

  • Jobie123
    Jobie123 Member Posts: 32 Member
    #5
    Thanks it’s really upset me

    Thanks it’s really upset me xx

  • Wehavenotimeatall
    Wehavenotimeatall CSN Member Posts: 488 Member
    #6
    Oh dear

    who was this person

    What qualifications have they got to tell you this

    annie

  • Jobie123
    Jobie123 Member Posts: 32 Member
    #7
    It was a lady on a mcmillan

    It was a lady on a mcmillan forum ! I know my size and staging make it aggresive etc but to get a private message like that flawed me 

  • Shecka1121
    Shecka1121 Member Posts: 117 Member
    #8
    That is not true.  There are

    That is not true.  There are several people with stage 3a with no recurrence.  The chances are greater than stage 1, but it all depends on the location, type, etc, your body.  Noone should ever say that and they are wrong.

  • Jobie123
    Jobie123 Member Posts: 32 Member
    #9
    Thanks for that !! I’m only

    Thanks for that !! I’m only just getting my head around it all and still getting over the radical nephrectomy its so nice to have some nice replies !!

  • lobbyist0724
    lobbyist0724 Member Posts: 516 Member
    #10
    Hi Jobie, that is just

    Hi Jobie, that is just horrible. The prognosis is not easy to determine as we are all different. Definitely not only by the T stage, which is why sometimes even the specialist doesn't want to tell you the percentage. Since it is based on the statisitcs with patients that are not having the same specifics. Perhaps you can paste the message from the other member here (without the username) and some with similar situation can comment on it.

    Wish you a healthy and happy New Year.

    P.S. please fill out your "My CSN Space" so we can see more of your experience and we can commet accordingly.

  • Jobie123
    Jobie123 Member Posts: 32 Member
    #11
    lobbyist0724 said:

    Hi Jobie, that is just

    Hi Jobie, that is just horrible. The prognosis is not easy to determine as we are all different. Definitely not only by the T stage, which is why sometimes even the specialist doesn't want to tell you the percentage. Since it is based on the statisitcs with patients that are not having the same specifics. Perhaps you can paste the message from the other member here (without the username) and some with similar situation can comment on it.

    Wish you a healthy and happy New Year.

    P.S. please fill out your "My CSN Space" so we can see more of your experience and we can commet accordingly.

    Thanks how do I fill in my

    Thanks how do I fill in my CSN , sorry so new to this !! 

  • Srashedb
    Srashedb CSN Member Posts: 482 Member
    #12
    Appalling

    who ever felt compelled to send you a private message with a dismal (and unqualified) take on your cancer should be outed. Suspect that it is a hoax and a very sick person.

    don’t blame you for being upset but please know that it is unlikely that it’s someone from this forum.

    Sarah

  • foxhd
    foxhd CSN Member Posts: 3,181 Member
    #13
    Jobie,

    I guess that person hasn't heard about me and a ton of other survivors who view living with cancer as a treatable chronic disease. Maybe she has a miserable life. Maybe she has a chronic disease. Maybe she feels better about herself sending negative vibes. Misery loves company you know. Hang around here. Success loves company too.

  • Jobie123
    Jobie123 Member Posts: 32 Member
    #14
    Thanks for all the lovely

    Thanks for all the lovely messages feel so much better to be speaking to such lovely people x

  • lobbyist0724
    lobbyist0724 Member Posts: 516 Member
    #15
    Jobie123 said:

    Thanks how do I fill in my

    Thanks how do I fill in my CSN , sorry so new to this !! 

    There is link on top of the

    There is link on top of the page right under the logo section

    "Click here to create or update your member "About Me" page"

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #16
    Hi Jobie. Try not to even

    Hi Jobie. Try not to even entertain that thought or message. The do not know your body and they def are not qualified to say even one word. Welcome!!!!!!!

  • marosa
    marosa Member Posts: 334 Member
    #17
    Welcome Jobie!

    Beware of negative vibes! Stick around.  You will find strong, caring, fun and positive people.  Wishing you a very good 2018

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com CSN Member Posts: 206 Member
    #18
    Same psthology

    My Dr was very positive about the results-clear margins-no lymphnodes-after a radical nephrectomy- grade 2 and he wants to see me in 6 months-I trust him I hope he's being cautious enough

  • Bellafelice
    Bellafelice Member Posts: 57 Member
    edited January 2018 #19
    You will be fine

    I just want to throw my two cents of info in here -I am in Total and Complete agreement with all the other members who told you not to event think about that "persons" comments.You just had a radical nephrectomy and the surgeons reportd  clear margins and no lymph node involvement, etc. All of that sounds super positive to me in terms of prognosis. No one has a crystal ball about what could potentially happen. I asked a top kidney cancer specialist for a prognosis, and he said "I dont give them-whenver I do I am always wrong"-so how  some massage tech could even come up with that is ridiculous in itself and very unprofessional in all ways. Some advice here-keep on moving forward. Follow your doctors advice for future check up and all will be fine. Start the new year wih all good thought and a clean slate! Enjoy every minute.

  • Jobie123
    Jobie123 Member Posts: 32 Member
    #20
    Thanks everyone I feel so

    Thanks everyone I feel so much better after all these reads ! A happy and healthy 2018 to you all

  • Krissyd73
    Krissyd73 Member Posts: 9
    #21
    Oh my gosh Jobie, shame on

    Kiss

    Oh my gosh Jobie, shame on them!!!! I am so sorry they did that.  Everyone is unique and what one may have.... one may not.  I am pretty new to the group and have found everyone to be so kind and positive.   Welcome!!! 

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