I accidentally saw it-- the prognosis is not good

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Phoenix Rising
Phoenix Rising Member Posts: 170
edited January 2015 in Kidney Cancer #1

Team,

I have resigned from my job and I am applying for social security disability, so I asked my oncologist to fill out a questionnaire.  I noticed there was a question about prognosis, so I determined that I would not read that question when he completed the questionnaire.  Well, 4 weeks passed before I got it back, and I forgot about the question.  I read through, and the prognosis was 6 months or less.  I had never been given a prognossis in almost 6 years, and have been sailing along just fine with the lack of that particular information.  I am heartbroken and privately hysterical. How do I deal with this?  I can't tell my family.

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  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
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    Social Security Disability

    Phoenix,

     

    Lets hope the doctors motive was to get you qualified for Social Security Disability and Medicare which kicks in 22 months after SSD is granted. You can always ask him what he really thinks. You will also note from others that their a lot of members of our club posting who were given experation dates years ago.

     

     

    Icemantoo

  • jason.2835
    jason.2835 Member Posts: 337 Member
    #3
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    AGREE!

    I thought the EXACT same thing as Iceman...

    The doctor probably believes that putting a short time frame will give you better chances of getting the disability; first, because the state doesn't think they'd be paying you that long and second because whoever is on the other end reading the report probably has a frickin' heart.

    It's a bit heartless for the doc to write that without telling you about it... If you've been dealing with this doctor for a long time, I would guess that he would tell you if the prognosis was that bad??  I'm thinking he's just trying to shock the gov't into giving you the darn disability.

     

  • donna_lee
    donna_lee Member Posts: 1,042 Member
    #4
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    jason.2835 said:

    AGREE!

    I thought the EXACT same thing as Iceman...

    The doctor probably believes that putting a short time frame will give you better chances of getting the disability; first, because the state doesn't think they'd be paying you that long and second because whoever is on the other end reading the report probably has a frickin' heart.

    It's a bit heartless for the doc to write that without telling you about it... If you've been dealing with this doctor for a long time, I would guess that he would tell you if the prognosis was that bad??  I'm thinking he's just trying to shock the gov't into giving you the darn disability.

     

    Term limits

    You're dealing with a couple of issues.  First the Dr. form for disability. Wow.  Call and ask him for a straight answer.  When you have that answer, call a family meeting and lay out the truth.  They need to know so they can support you.  And no matter what, start getting your affairs and paperwork in order.

    Yes, it's a lot to deal with.  I've been there.  Once you come to the realization that you Are still alive, and will live some more, then get on with enjoying what remains.

    Keep us posted.

    Donna

  • nsb748
    nsb748 Member Posts: 89
    #5
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    donna_lee said:

    Term limits

    You're dealing with a couple of issues.  First the Dr. form for disability. Wow.  Call and ask him for a straight answer.  When you have that answer, call a family meeting and lay out the truth.  They need to know so they can support you.  And no matter what, start getting your affairs and paperwork in order.

    Yes, it's a lot to deal with.  I've been there.  Once you come to the realization that you Are still alive, and will live some more, then get on with enjoying what remains.

    Keep us posted.

    Donna

    Tell the people that you care

    Tell the people that you care about so that they can be your support system. 

    Use that support system along with every possible option to make the Dr. look stupid by beating his estimates.

     

    Fox will likely chime in, but if I remember correctly he was given 6 months several years ago. 

  • Allochka
    Allochka Member Posts: 1,062 Member
    #6
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    donna_lee said:

    Term limits

    You're dealing with a couple of issues.  First the Dr. form for disability. Wow.  Call and ask him for a straight answer.  When you have that answer, call a family meeting and lay out the truth.  They need to know so they can support you.  And no matter what, start getting your affairs and paperwork in order.

    Yes, it's a lot to deal with.  I've been there.  Once you come to the realization that you Are still alive, and will live some more, then get on with enjoying what remains.

    Keep us posted.

    Donna

    I was treated for infertility

    I was treated for infertility some time ago. My health insurance was not covering infertility treatments, so my gynecologist was always writing down some other diagnoses on the bills, so I could get the money for the doctor visits back. It looks like your oncologist simply tries to help you that way to get the disability, just as previous posters said!

  • foxhd
    foxhd Member Posts: 3,181 Member
    #7
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    Allochka said:

    I was treated for infertility

    I was treated for infertility some time ago. My health insurance was not covering infertility treatments, so my gynecologist was always writing down some other diagnoses on the bills, so I could get the money for the doctor visits back. It looks like your oncologist simply tries to help you that way to get the disability, just as previous posters said!

    an application

    an application form is not a medical record. Your doctor knows the difference. He would not want to hold up your application process. He doesn't have to guarantee that you will be dead in 6 mos.

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #8
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    foxhd said:

    an application

    an application form is not a medical record. Your doctor knows the difference. He would not want to hold up your application process. He doesn't have to guarantee that you will be dead in 6 mos.

    I agree that it was done for

    I agree that it was done for the purpose of getting your application approved. Yes, the doctor should have mentioned that to you, but he did not. The way I found out I had cancer was when I was sitting waiting for the CT scan holding an envelope meant for the technician. I opened it and read that I had a large mass, likely carcinoma. There was a stomach flip and then I gathered my wits once again. I can  imagine it was a shock for you to see it in print.

    But your family needs to know. Put yourself in their position... that should help you with your decision on what to share with them.

    Hugs

    Jojo

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #9
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    I'm calming down...

    Thank you all so much!  I feel better after what you have said here.  I will see the onc next week and ask him about what he wrote, although I don't want a REAL prognosis.  I think not having one has helped me keep it moving.  I was stage 4 when I was diagnosed  in 2009 and I had, until a few motnhs ago, continued to ski, play golf, and rollerskate. 

     

    Since you all pointed it out, he may have said that to help me.... he is the one who recommended I stop working.  When I told him during the subsequent visit that I would, in fact, stop working, he said that was excellent.

    My mom is in another state and is now battling pancreatic cancer.  Before she was diagnosed,  she used to visit me every other month and was Johnny-on-the-Spot whenever I was hospitalized or having a difficult time.  Now that she is ill, I always try to let her know I'm doing well, so she won't be upset about not being able to visit or help me. I travel to visit her instead,  so she can see my face and know I'm okay.

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #10
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    jason.2835 said:

    AGREE!

    I thought the EXACT same thing as Iceman...

    The doctor probably believes that putting a short time frame will give you better chances of getting the disability; first, because the state doesn't think they'd be paying you that long and second because whoever is on the other end reading the report probably has a frickin' heart.

    It's a bit heartless for the doc to write that without telling you about it... If you've been dealing with this doctor for a long time, I would guess that he would tell you if the prognosis was that bad??  I'm thinking he's just trying to shock the gov't into giving you the darn disability.

     

    Been his patient for 2 years

    Jason.2835 I have been this oncologist's patient for 2 years and we have a very good rapport.  I would hope he would tell me.  He did tell me I was going to start having good days and bad days, and then he recommended that I stop working. 

  • Phoenix Rising
    Phoenix Rising Member Posts: 170
    #11
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    donna_lee said:

    Term limits

    You're dealing with a couple of issues.  First the Dr. form for disability. Wow.  Call and ask him for a straight answer.  When you have that answer, call a family meeting and lay out the truth.  They need to know so they can support you.  And no matter what, start getting your affairs and paperwork in order.

    Yes, it's a lot to deal with.  I've been there.  Once you come to the realization that you Are still alive, and will live some more, then get on with enjoying what remains.

    Keep us posted.

    Donna

    Getting affairs in order

    I am going to get my affairs in order, just because I need to. 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #12
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    Phoenix Rising said:

    I'm calming down...

    Thank you all so much!  I feel better after what you have said here.  I will see the onc next week and ask him about what he wrote, although I don't want a REAL prognosis.  I think not having one has helped me keep it moving.  I was stage 4 when I was diagnosed  in 2009 and I had, until a few motnhs ago, continued to ski, play golf, and rollerskate. 

     

    Since you all pointed it out, he may have said that to help me.... he is the one who recommended I stop working.  When I told him during the subsequent visit that I would, in fact, stop working, he said that was excellent.

    My mom is in another state and is now battling pancreatic cancer.  Before she was diagnosed,  she used to visit me every other month and was Johnny-on-the-Spot whenever I was hospitalized or having a difficult time.  Now that she is ill, I always try to let her know I'm doing well, so she won't be upset about not being able to visit or help me. I travel to visit her instead,  so she can see my face and know I'm okay.

    First of all, I am sorry for

    First of all, I am sorry for all the angst you are going through. But the folks here that responded are right. I used to be a provider who had to fill out those long, long questionaires. As I told my husband and my clients BAD=GOOD to get a quick response and positive benefit.

    Yet I can appreciate how this much have scared you.

    FYI: I got my SSDI in 4 months. I was prepared for the long long wait and expecting to get denied my first attempt. My case is NOT related to RCC. But I finally got to read my primary doctor's working diagnoses at time she was filling out the forms. She painted it to be "the worst"...I had a complicated case and well, she was just good at being my advocate. She too, talked me into quitting work way before I wanted ($$). But she knew me well and it was best.

    Hopefully, you'll have a that talk with your oncologist. If you cannot wait, then ask his nurse to relay your message to him and take it from there.

    Let us know how you are doing and how this turns out. I hope you get the SSDI in a timely matter.

    Gentle hugs, Jan

  • angec
    angec Member Posts: 924 Member
    #13
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    Hi, Phoneix.  Has your

    Hi, Phoneix.  Has your condition changed in a significant way?  How was your last scan? I tend to agree with the others, your doc wants you to get the disability and is doing you justice with the prognosis statement.  I would also like to add that if you had six months to live, that is plenty of time to work out other treatments.  And there are so many out there now that you can try. I would call the doc and ask him, if you can't wait for the next visit.  I hope you do get the disabily, even if someone with cancer can work, they shouldn't have to.  All the best to you.  What are you on now?

  • gatorbob
    gatorbob Member Posts: 23
    #14
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    Phoenix

    Before you abandon ship have a sit down with your OC. If your condition is a grave as he described it's a given he would have addressed it with you.Be sure to speak directly with the Doctor!Not 'someone' in the office.l hope it was only his attempt to expediate your SS request. Also if your prognosis at that stage I'm sure he would have suggested Hospice. Have the conversation now! Don't wait.....for you sanity's sake!

    Big hug!!!!!!! GatorBob

     

  • Limelife50
    Limelife50 Member Posts: 476
    #15
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    Phoenix Rising said:

    I'm calming down...

    Thank you all so much!  I feel better after what you have said here.  I will see the onc next week and ask him about what he wrote, although I don't want a REAL prognosis.  I think not having one has helped me keep it moving.  I was stage 4 when I was diagnosed  in 2009 and I had, until a few motnhs ago, continued to ski, play golf, and rollerskate. 

     

    Since you all pointed it out, he may have said that to help me.... he is the one who recommended I stop working.  When I told him during the subsequent visit that I would, in fact, stop working, he said that was excellent.

    My mom is in another state and is now battling pancreatic cancer.  Before she was diagnosed,  she used to visit me every other month and was Johnny-on-the-Spot whenever I was hospitalized or having a difficult time.  Now that she is ill, I always try to let her know I'm doing well, so she won't be upset about not being able to visit or help me. I travel to visit her instead,  so she can see my face and know I'm okay.

    Call Him

    Well just call and ask plus i really think if you had six months you would have been told

     

     

  • gatorbob
    gatorbob Member Posts: 23
    #16
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    New study

    Are you still at Emory??? If so what days? I ended my Lily study after 27 months of no growth! A node popped up on my last scan so I've switched to an in house study using Afinitor. First scan is next month.Have you had the conversation with your OC??? How's the Bear? He's still working hard for you!!! I know these are tough times,but you're  tough kid!!

  • foroughsh
    foroughsh Member Posts: 779 Member
    #17
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    Phoenix
    Did you talk to your

    Phoenix

    Did you talk to your oncologist? I'm hopefully waiting for good news from you

    Forough

     

  • danbren2
    danbren2 Member Posts: 311
    #18
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    foroughsh said:

    Phoenix
    Did you talk to your

    Phoenix

    Did you talk to your oncologist? I'm hopefully waiting for good news from you

    Forough

     

    ?????

    Phoenix,

         How are you? Hopefully things are not as bad as you thought, and you are doing really well and have just been to busy to post!

                                    Prayers for good health!

                                    Brenda

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