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  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited May 2020 #22
    Thanks for writing back and

    Thanks for writing back and explaining.  Our purpose to go to different doctors for additional opinions.  In our case, we came across one who didnt care about my husband and wanted him to not have his tumor removed.  My husband wouldnt be alive if we went along with that doc.   

    If we had three doctors all agreeing to a plan, as you do, my husband would go along with that decision.  He would think that they must be right, as they all agree.  He would also feel good that he took the time to decide.

    I do want to tell you that I appreciate anyone who participates in clinical trials, as i believe it helps others too.

    Sorry to hear you are furman 3.  My husband is too and is stage 4.  I think you have a hopeful future.

  • Biner
    Biner Member Posts: 137 Member
    edited May 2020 #23
    Yes, I have almost stage 4

    Yes, I have almost stage 4 and there is only a question of time.

  • AliceB1950
    AliceB1950 Member Posts: 244 Member
    edited May 2020 #24
    Biner said:

    Yes, I have almost stage 4

    Yes, I have almost stage 4 and there is only a question of time.

    Your cancer has been removed

    Your cancer has been removed and it was stage 3.  Saying "It's only a matter of time" is unnecessarily fatalistic and not true.  Many stage 3 cancer patients have no further problems.

  • Biner
    Biner Member Posts: 137 Member
    #25
    its a ned?


    FINDINGS:
    There is no pleural or pericardial effusion. No enlarged mediastinal or axillary lymph nodes are identified.

    The lungs are clear.

    There are no radiopaque gallstones or dilated ducts, and the liver, spleen,

    The right kidney is normal.

    There are new postoperative changes on the left consistent with partial nephrectomy with residual thickening/scarring of the perinephric fascia.. There is no ascites.




    No enlarged lymph nodes are identified.

    There are no dilated or thickened loops of bowel. The rectum is distended with stool.

    There are no destructive osseous lesions.

    IMPRESSION:
    Status post partial left nephrectomy with expected postoperative changes and no acute process



  • a_oaklee
    a_oaklee Member Posts: 566 Member
    #26
    What is the title to this

    What is the title to this report?  Is it an xray or full body CT scan?

    Whatever this report is, the results are great!

  • Biner
    Biner Member Posts: 137 Member
    #27
    ct scan

    abdomen chest pelvis ct with contrast

    I'm asking because nobody called me with result i download report from hospital account

  • Biner
    Biner Member Posts: 137 Member
    edited May 2020 #28
    a_oaklee said:

    Thanks for writing back and

    Thanks for writing back and explaining.  Our purpose to go to different doctors for additional opinions.  In our case, we came across one who didnt care about my husband and wanted him to not have his tumor removed.  My husband wouldnt be alive if we went along with that doc.   

    If we had three doctors all agreeing to a plan, as you do, my husband would go along with that decision.  He would think that they must be right, as they all agree.  He would also feel good that he took the time to decide.

    I do want to tell you that I appreciate anyone who participates in clinical trials, as i believe it helps others too.

    Sorry to hear you are furman 3.  My husband is too and is stage 4.  I think you have a hopeful future.

    doctor says its not fuhrman

    They said its not Fuhrman grade the isup/who 3, Fuhrman still 2

  • donna_lee
    donna_lee Member Posts: 1,045 Member
    edited May 2020 #29
    That sounds lik NED

    Since I've encountered both in the past. No NED twice and NED.  And many questionable....let's explore with another test in various organs or locations.  Make your plans with complete info and then stop worrying.

    Good luck and Hugs,

    donna_lee

  • Biner
    Biner Member Posts: 137 Member
    #30
    got Doc reviewe

    CT scan looks good - no evidence of recurrence. You can continue to see Dr. for follow-up.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    edited May 2020 #31
    Congratulations George.  You

    Congratulations George.  You have no evidence of disease.  NED.  Which means, you had cancer, but you do not have cancer anymore.  Its time to rejoice.  The only thing you must do is have your followup scans when they are due.  Best wishes for you.

  • Smi
    Smi Member Posts: 22 Member
    #32
    Congratulations!!!

    Congratulations!!!

  • Mmoses25
    Mmoses25 Member Posts: 326 Member
    edited June 2020 #33
    Congratulations.

    You are Ned good job

  • Vegas Tommy
    Vegas Tommy Member Posts: 11
    edited August 2020 #34
    Starting my Journey with Stage 4 RCC

    My name is Tommy and I Have Stage 4 RCC that has spread to the lymphnodes. I am here to ask for advice on what meds should be prescribed as I am being treated by the VA and I am not too confident.

    Back in Jan. 2020 they noticed I had a 2cm mass/ cyst in my right kidney and they wanted to monitor it and check on it in 9 months. Well in June I started pissing blood clots....alot! I went to the hospital and they did testing,

    CT scan, Pet scan, ect..... They said my kidney was non functioning and I had a 6 cm mass with enlarged lymphnodes. The surgeon wants to remove the kidney but they want to put me on chemo prior to the surgery to shrink and kill

    any residuals that may be in my body. I do a MRI tomorrow and meet with Oncologist on Wed. 

    I just don't understand how a 55 year old can go from a cyst to stage 4 in under 6 months! Did they drop the ball? Just doesnt seem right.

    They want to hit me with chemo very aggressively and then pull the kidney out as they Doctor said it still has some function and it will help with the chemo. The doc said I have a 20% shot at 5 years survival but I think 

    I should fly by 5 years. What is this Keytruda-Inlyta medication...looks like some of you are having success with this! Some of you have the best doctors out there...what should I be asking? Thanks for sharing.

  • misterace
    misterace Member Posts: 37 Member
    #35
    Vegas Tommy said:

    Starting my Journey with Stage 4 RCC

    My name is Tommy and I Have Stage 4 RCC that has spread to the lymphnodes. I am here to ask for advice on what meds should be prescribed as I am being treated by the VA and I am not too confident.

    Back in Jan. 2020 they noticed I had a 2cm mass/ cyst in my right kidney and they wanted to monitor it and check on it in 9 months. Well in June I started pissing blood clots....alot! I went to the hospital and they did testing,

    CT scan, Pet scan, ect..... They said my kidney was non functioning and I had a 6 cm mass with enlarged lymphnodes. The surgeon wants to remove the kidney but they want to put me on chemo prior to the surgery to shrink and kill

    any residuals that may be in my body. I do a MRI tomorrow and meet with Oncologist on Wed. 

    I just don't understand how a 55 year old can go from a cyst to stage 4 in under 6 months! Did they drop the ball? Just doesnt seem right.

    They want to hit me with chemo very aggressively and then pull the kidney out as they Doctor said it still has some function and it will help with the chemo. The doc said I have a 20% shot at 5 years survival but I think 

    I should fly by 5 years. What is this Keytruda-Inlyta medication...looks like some of you are having success with this! Some of you have the best doctors out there...what should I be asking? Thanks for sharing.

    Hi Tommy

    Hi Tommy,

    I am so sorry to hear that you are going through this. While I can only provide you with limited advice directly relevant to your situation, I would advise that you create a new post so that eveyrone can see your post and respond to it accordingly, this way it doesn't get buried in another person's thread. Regarding your situation, please try to see if you can find a urologist that specializes exclusively in RCC so that you can get some clear answers. It sounds like you are in Vegas, I do not know any in that area, but there are quite a few here in Southern California. Mine is Dr. Brian Shuch at UCLA, and he is wonderful. 

     

    Also, the smartpatients.com kidney cancer forum would also be a great resource for you as there are many long term stage 4 survivors there with tons of information. Please take a look there. 

     

    I am sending you positive thoughts, love, and prayer for your recovery. I hope that you will find the correct treatment soon to heal you. 

  • Biner
    Biner Member Posts: 137 Member
    edited February 2021 #36
    had my 6 monts scan,Ned 

    had my 6 monts scan,Ned 

    but few new findings on report

     Few shoddy mediastinal lymph nodes are nonspecific, and unchanged from May 2020.

    There are few dependent opacities in both lung bases

    .Few prominent rounded opacities abutting the pancreatic tail near the left renal surgical bed are stable, perhaps relating to small splenules.

  • Mmoses25
    Mmoses25 Member Posts: 326 Member
    edited February 2021 #37
    Congratulations

    Congradulation on being Ned 

  • eug91
    eug91 Member Posts: 471 Member
    edited February 2021 #38
    NED!

    Congrats! Keep it going! 

  • Canadian Sandy
    Canadian Sandy Member Posts: 784 Member
    edited February 2021 #39
    Congrats Biner!

    Congrats Biner!

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    edited February 2021 #40
    Congratulations

    On NED, here's to many more!

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