My oncologist said "No" to donating me kidney!

roseann4
roseann4 Member Posts: 992 Member
in Breast Cancer #1
The Yale Transplant Center is shocked. She feels it will present a risk to my son. The Yale doctors don't agree but she has the final word. I made an appointment to meet her in person to discuss. The transplant center suggests my case be reviewed by a tumor board. That's what I want. I can't live with one person deciding on this important issue. I respect my doctor but she doesn't know everything. Hopefully she will have an open mind. By the way, they completed all the tests and I am a really healthy breast cancer survivor. so frustrating! I see her on Tuesday at noon. Would all the mom out there pray for me? Hugs.

By the way, there is always a risk with donation that the donor will have cancer. They don't do a mammogram or psa test on the deceased donors. No time! At least I've been tested from top to bottom.

Roseann

Comments

  • MAJW
    MAJW Member Posts: 2,510 Member
    #2
    Prayers...
    Prayers coming your way, Roseann...I can certainly understand your frustration, as a mother myself...But...I will say this....I feel you need to do what you feel is best for you and your son...I would ask your oncologist if she's a mother and what would she do, faced with the same decision as you...
    Hugs, Nancy
  • camul
    camul Member Posts: 2,537
    #3
    Roseann
    Of course prayers are coming your way. Maybe you will have to find a different oncologist if that is the case! But as a mom, we do whatever it takes to save our children, my heart is going out to you.

    Prayers and hugs,
    Carol
  • Rague
    Rague Member Posts: 3,653 Member
    #4
    FIGHT!
    I am so sorry!

    As you say there is a chance of cancer but that is true of anyone. You are a known entity that at this time is NED and you're healthy. The Transplant Team isn't concerned about the 'what if' - they're the ones I'd think might be negative.

    Definately ask for a Board. If you get one, see if you can get the Transplant Team to put input in on what they feel/why they feel it and if you are denied what the prognosis for your Son is - short term and long term; if you are allowed to do it or denied doing it; potential quality of life either way. If you do get a Board, see if you can get the Transplant Team to submit info backing why they are not concerned with that possibility. Medical testimony could swing the pendulum the other way.

    Remember the squeeeky wheel gets the oil. And I'd squeek real loud when it comes to my Sons or G-daughter - well Hubby to IF I neded to.Prayers and more prayers!

    Susan
  • Rague
    Rague Member Posts: 3,653 Member
    #5
    Just had another 'thought' to use!
    Once a Breast Cancer Survivor is a year out of TX (other than HT which doesn't count) and NED, you can legally donate blood. Found this out a bit over 2 mths ago. Did donate - got a letter the other day to remind it's time again. I'm not going to til after my cataract surgeries - don't want to do anything that might stress immune system before eyes are healed.

    Point is - there is blood being taken and given from known BC Survivors to others. How is that not a potential if you are for your Son?

    Susan

    I'm still listed as an 'Organ Donor' on my DL, Military ID and in my Advanced Directives as they say that even as a BC Survivor if I die from other causes, there are some 'parts' that are 'useable' - I don't need them anymore so if can help someone why not.
  • roseann4
    roseann4 Member Posts: 992 Member
    #6
    Rague said:

    Just had another 'thought' to use!
    Once a Breast Cancer Survivor is a year out of TX (other than HT which doesn't count) and NED, you can legally donate blood. Found this out a bit over 2 mths ago. Did donate - got a letter the other day to remind it's time again. I'm not going to til after my cataract surgeries - don't want to do anything that might stress immune system before eyes are healed.

    Point is - there is blood being taken and given from known BC Survivors to others. How is that not a potential if you are for your Son?

    Susan

    I'm still listed as an 'Organ Donor' on my DL, Military ID and in my Advanced Directives as they say that even as a BC Survivor if I die from other causes, there are some 'parts' that are 'useable' - I don't need them anymore so if can help someone why not.

    Thanks everyone!
    Susan, you must have posted the message that got this started for me. I read on the boards that someone donated blood so I asked to have my case reviewed. I've decided if my onc won't agree to bring this to the tumor board then she is the wrong person to care for me. I just want more opinions before the door is closed. That said, if a board of experts believe there is a serious risk I would not want to give him my kidney.

    Roseann
  • skipper54
    skipper54 Member Posts: 936 Member
    #7
    roseann4 said:

    Thanks everyone!
    Susan, you must have posted the message that got this started for me. I read on the boards that someone donated blood so I asked to have my case reviewed. I've decided if my onc won't agree to bring this to the tumor board then she is the wrong person to care for me. I just want more opinions before the door is closed. That said, if a board of experts believe there is a serious risk I would not want to give him my kidney.

    Roseann

    You go girl!
    Will pray for the right outcome from the review. I understand how much this means to you. And agree, if we can donate blood and they don't test other donors the way we've been tested . . .

    Hang in there and fight for what you want!
  • DebbyM
    DebbyM Member Posts: 3,289 Member
    #8
    MAJW said:

    Prayers...
    Prayers coming your way, Roseann...I can certainly understand your frustration, as a mother myself...But...I will say this....I feel you need to do what you feel is best for you and your son...I would ask your oncologist if she's a mother and what would she do, faced with the same decision as you...
    Hugs, Nancy

    I am so sorry Roseann that
    I am so sorry Roseann that your oncologist said no to your donating the kidney.


    Hugs, Debby
  • VickiSam
    VickiSam Member Posts: 9,079 Member
    #9
    skipper54 said:

    You go girl!
    Will pray for the right outcome from the review. I understand how much this means to you. And agree, if we can donate blood and they don't test other donors the way we've been tested . . .

    Hang in there and fight for what you want!

    Roseann ..
    Push, Fight for this review ---

    There are two sides to every coin, so I can see why your Oncologist wants to keep you
    safe, your body stress free of this surgery. However, you are a Mother ... so you
    will continue to search the ends of our earth for a new Kidney for your son.

    Strength, Courage and Hope for a CURE.

    Vicki Sam
  • Lynn Smith
    Lynn Smith Member Posts: 1,264 Member
    #10
    VickiSam said:

    Roseann ..
    Push, Fight for this review ---

    There are two sides to every coin, so I can see why your Oncologist wants to keep you
    safe, your body stress free of this surgery. However, you are a Mother ... so you
    will continue to search the ends of our earth for a new Kidney for your son.

    Strength, Courage and Hope for a CURE.

    Vicki Sam

    When I read
    When I read the earlier post I wondered about you donating your kidney to your son.I had some apprehension.It would be alot for you to go through the surgery(I prefer they leave my body alone if at all possible).Also worried about the risk for your son.Pray that soon a match will be found and your son will be healthy again.Wishing you stay in good health too.

    Thoughts and Prayers to you and your son.Keep us informed.

    Lynn Smith
  • Gabe N Abby Mom
    Gabe N Abby Mom Member Posts: 2,413
    #11
    I would do it for my son
    I would do it for my son too.

    It would be good to know exactly why your onc is objecting. Is it the worry that there could be cancer in the kidney? Or is he worried about your health for some reason?

    Please let us know what happens on Tuesday.

    Hugs,

    Linda
  • mamolady
    mamolady Member Posts: 796 Member
    #12
    roseann4 said:

    Thanks everyone!
    Susan, you must have posted the message that got this started for me. I read on the boards that someone donated blood so I asked to have my case reviewed. I've decided if my onc won't agree to bring this to the tumor board then she is the wrong person to care for me. I just want more opinions before the door is closed. That said, if a board of experts believe there is a serious risk I would not want to give him my kidney.

    Roseann

    blood vs organ
    Roseann,
    The difference between receiving blood and receiving an organ is that your son will have to be on drugs to supress his immune system. That may give the cancer a chance to rear its ugly head even if you have NED right now. When a person receives blood, they don't need the anti rejection drugs.
    Hopefully this can all be sorted out and your son will have a new kidney asap! (even if it is not yours)
    All the best,
    Cindy
  • Megan M
    Megan M Member Posts: 3,000
    #13
    VickiSam said:

    Roseann ..
    Push, Fight for this review ---

    There are two sides to every coin, so I can see why your Oncologist wants to keep you
    safe, your body stress free of this surgery. However, you are a Mother ... so you
    will continue to search the ends of our earth for a new Kidney for your son.

    Strength, Courage and Hope for a CURE.

    Vicki Sam

    Hoping that the review will
    Hoping that the review will have a good resolution for your son and you.


    Good luck,

    Megan

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