Tumor located in the 'collective area' of the kidney & PNX nodes....

adman
adman Member Posts: 336
As most of you know I'm 6 weeks post surgery. I had a full Neph that was 5.0cm. I received a great path report. Stage 1, grade 1 w clear margins.
As I've been continuing to educate myself & learning as much as I can from all of you, as well as, reading, etc, I've come across some very limited information regarding tumors that were located in the 'collective area' of the kidney. Mine was partly in this area & the research, although, very limited, says these are much more aggressive. Does this negate my great path report in some way?

Additionally, I've come to find out that my nodes were not taken out & biopsied (sp). PNX was the code. this frightens the heck out of me.

I'm dealing with post-surgical stress anyway now that my new reality & I have to live with the ( every 3 months mystery ) waiting, which I know most you also live with. So to add this to the mix isn't as comforting as what I felt a few weeks ago thinking I was more than likely done with this dreaded disease & had won the lottery.

If anyone knows of a Dr that may have some expertise in either of these areas I could speak with it would be greatly appreciated. My Dr doesn't have the best bed side manner, although he is a good surgeon that seems to have did a good job with my Neph.

Thanks.

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Prognosis
    adman, are you referring to collecting duct carcinoma? I'd think it unlikely that if that is what you had you would have been classed as stage 1; but you ought to ask your docs about that - maybe send a short email question since that often leads to a speedy response.

    Which particular lymph nodes are you thinking about? There's a large number. Leaving aside the first question, your very early stage and grade probably make it so unlikely that you'll have any compromised nodes that there would have been no need to investigate. They wouldn't have even dreamt of biopsy or excision - completely uncalled-for, I would think.

    [For whatever comfort it may give you, I'm about to have a fourth CT scan with contrast and the main focus (unless something else turns up!) will be on enlarged retroperitoneal lymph nodes - roughly in the region my kidney was in. My path report showed NxMx and the experts saw no reason for investigating the nodes, even with 9cm. stage 4, grade 4, necrotic, sarcomatoid etc. I'll let you know what is found in a few weeks time. If I suddenly disappear off the radar, all bets are off and you're on your own :) - apart, that is, from all the good folks you're getting to know here and on ACOR! However, I'm hopeful I'm not about to move into s4 g4 T4 N2/ M1 where my prognosis would be a trifle more daunting than yours.]
  • adman
    adman Member Posts: 336

    Prognosis
    adman, are you referring to collecting duct carcinoma? I'd think it unlikely that if that is what you had you would have been classed as stage 1; but you ought to ask your docs about that - maybe send a short email question since that often leads to a speedy response.

    Which particular lymph nodes are you thinking about? There's a large number. Leaving aside the first question, your very early stage and grade probably make it so unlikely that you'll have any compromised nodes that there would have been no need to investigate. They wouldn't have even dreamt of biopsy or excision - completely uncalled-for, I would think.

    [For whatever comfort it may give you, I'm about to have a fourth CT scan with contrast and the main focus (unless something else turns up!) will be on enlarged retroperitoneal lymph nodes - roughly in the region my kidney was in. My path report showed NxMx and the experts saw no reason for investigating the nodes, even with 9cm. stage 4, grade 4, necrotic, sarcomatoid etc. I'll let you know what is found in a few weeks time. If I suddenly disappear off the radar, all bets are off and you're on your own :) - apart, that is, from all the good folks you're getting to know here and on ACOR! However, I'm hopeful I'm not about to move into s4 g4 T4 N2/ M1 where my prognosis would be a trifle more daunting than yours.]

    collective duct....

    by being located in the 'collective' area, does that automatically make it 'collective duct' carcinoma?
    Mine was listed on the path report as 'Clear Cell-Renal Cell Carcinoma', but no Sarcomatoid feature was listed, if that means anything.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    adman said:

    collective duct....

    by being located in the 'collective' area, does that automatically make it 'collective duct' carcinoma?
    Mine was listed on the path report as 'Clear Cell-Renal Cell Carcinoma', but no Sarcomatoid feature was listed, if that means anything.

    Collecting duct
    Please note spelling, adman! (I haven't heard the expression "collective area" so can't help clarify that. You'll need to ask your docs for more information.)

    Can you maybe put up more of your path report here? No sarcomatoid is good news - sarcomatoid change is not what anyone would choose to have.
  • adman
    adman Member Posts: 336

    Collecting duct
    Please note spelling, adman! (I haven't heard the expression "collective area" so can't help clarify that. You'll need to ask your docs for more information.)

    Can you maybe put up more of your path report here? No sarcomatoid is good news - sarcomatoid change is not what anyone would choose to have.

    path report.....

    Mr. Wedge,

    Thank you for your valuable input and insight.

    SPECIMEN(S)
    (A) KIDNEY, TOTAL NEPHRECTOMY, RIGHT ADRENAL GLAND AND URETER

    DIAGNOSIS:
    Right Radical Nephrectomy and Ureter -
    - Clear Cell Renal Cell Carcinoma ( Conventional Cell Carcinoma )
    - This is a Fuhrman nuclear Grade 1
    - The carcinoma measures 5.0cm in diameter
    - No extension beyond the kidney is seen
    - The surgical margins of excision including the distal ureteral margin and the vascualr margins are free of malignancy.
    - A portion of adreneal gland is also included and it is free of malignancy
    - A cystic portion appears to be a resolving area of hematoma

    Cancer Case Summary:
    Procedure: Radical Nephrectomy
    Specimen laterality Right
    Tumor Size: 5.0 x 5.0 x 5.0 cm
    Tumor focality Unifocal
    Macroscopic extent of tumor Tumor limited to kidney
    Histologic type Clear Cell Renal Cell Carcinoma
    Sarcomatoid feature Not identified
    Histologic grade Fuhrman nuclear grade 1
    Microscopic tumor extension Tumor limited to the kidney

    MARGINS Gerota's fascial margin: clear
    Renal vein margin: clear
    Ureteral margin: clear
    Renal artery margin: clear

    Lymphovascular Invasion: Not identified

    Pathologic Staging:

    Primary Tumor:
    pT1: Tumor 7.0 cm or less in greater dimension, limited to the kidney

    Regional Lymph Nodes:
    pNX; regional nodes cannot be assessed
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    adman said:

    path report.....

    Mr. Wedge,

    Thank you for your valuable input and insight.

    SPECIMEN(S)
    (A) KIDNEY, TOTAL NEPHRECTOMY, RIGHT ADRENAL GLAND AND URETER

    DIAGNOSIS:
    Right Radical Nephrectomy and Ureter -
    - Clear Cell Renal Cell Carcinoma ( Conventional Cell Carcinoma )
    - This is a Fuhrman nuclear Grade 1
    - The carcinoma measures 5.0cm in diameter
    - No extension beyond the kidney is seen
    - The surgical margins of excision including the distal ureteral margin and the vascualr margins are free of malignancy.
    - A portion of adreneal gland is also included and it is free of malignancy
    - A cystic portion appears to be a resolving area of hematoma

    Cancer Case Summary:
    Procedure: Radical Nephrectomy
    Specimen laterality Right
    Tumor Size: 5.0 x 5.0 x 5.0 cm
    Tumor focality Unifocal
    Macroscopic extent of tumor Tumor limited to kidney
    Histologic type Clear Cell Renal Cell Carcinoma
    Sarcomatoid feature Not identified
    Histologic grade Fuhrman nuclear grade 1
    Microscopic tumor extension Tumor limited to the kidney

    MARGINS Gerota's fascial margin: clear
    Renal vein margin: clear
    Ureteral margin: clear
    Renal artery margin: clear

    Lymphovascular Invasion: Not identified

    Pathologic Staging:

    Primary Tumor:
    pT1: Tumor 7.0 cm or less in greater dimension, limited to the kidney

    Regional Lymph Nodes:
    pNX; regional nodes cannot be assessed

    path report
    M, you're laughing! I can't see any reference to "collective area" or any similar phrase in your path. report. You HAD a conventional clear cell tumour (so not collecting duct carcinoma)and it's all gone. You'll be routinely followed up but in your shoes I'd be packing up my bags and hiking out of here and KIDNEY-ONC, to get on with my life.
  • adman
    adman Member Posts: 336

    path report
    M, you're laughing! I can't see any reference to "collective area" or any similar phrase in your path. report. You HAD a conventional clear cell tumour (so not collecting duct carcinoma)and it's all gone. You'll be routinely followed up but in your shoes I'd be packing up my bags and hiking out of here and KIDNEY-ONC, to get on with my life.

    thanks....

    This is a part of my education to best understand what I have and how to best follow up in future. These Dr's don't take the time to explain ****, IMHO, all they tell you in "You're ok, you'll be fine", so if you have question due to ambiguity about information you've heard or read, forget it.
    I appreciate your feedback. I realize I'm very lucky but want to be able to say that 15,20, 30 years from now, as well.

    Your understanding is appreciated.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    adman said:

    thanks....

    This is a part of my education to best understand what I have and how to best follow up in future. These Dr's don't take the time to explain ****, IMHO, all they tell you in "You're ok, you'll be fine", so if you have question due to ambiguity about information you've heard or read, forget it.
    I appreciate your feedback. I realize I'm very lucky but want to be able to say that 15,20, 30 years from now, as well.

    Your understanding is appreciated.

    thanks
    You're very welcome. I do understand and I hope to be around to hear you say it!
  • donna_lee
    donna_lee Member Posts: 1,041 Member

    thanks
    You're very welcome. I do understand and I hope to be around to hear you say it!

    Don't Worry, Be Happy
    That's the name of the song. You have a great pathology. Have your regular follow up reports and move on.
    The nodes you were concerned about in one of your first reports....Generally, if it appears the primary tumor has not grown beyond the Gerota facia (the sack the kidney/adrenal are in) and the removal leaves clean margins, the surgeon does not remove the para-caval lymph nodes. This is a set of nodes, 10 or 11, that are directly under the kidney.
    Yes, you have a good path rept.
    Donna