Question about staging

Hd67xlch
Hd67xlch Member Posts: 151 Member
edited April 2016 in Kidney Cancer #1

Im confused about this and I know I need to talk to the DR but thats a few weeks out. Here is what my staging sheets says.

8-11

cancer/subtype L Kidney RCC,clear cell,Grade 2

Date of diagnosis 8-11

STAGING  T  1 (5.9)

                N x                       STAGE 1 2011       R lower lung reccurance (2016) metastisized (2016)

                M 0

Goals of thereapy Currative intent                 Your goals: Lower Lobectomy

Treatment Plan   Lower Lobectomy

                           Then Sutent or Votrient   (not doing either unless it comes back again my plan at this point)

                            If not resectable XRT

 

Ok so it came back 5 years later in my  lung what stage is it? Since they got it all and I have no more in my body accoring to all the tests am I a stage anything at this point?  Or am I considered cured till when and if it comes back again. The staging sheet says nothing about the lung mets in 2016 as far as staging.

One more question when did everyone go back to driving? After my kidney removal it took a couple weeks but Im 8 days out from a traditional lobectomy and on no pain meds so I feel I can drive today, I feel good, just feels like I got whacked with a base ball bat on my upper back, and I have no right side body strenght yet.

Thanks again

 

Comments

  • foroughsh
    foroughsh Member Posts: 779 Member
    Hd67
    Once the RCC comes back,

    Hd67

    Once the RCC comes back, then the patient's stage is 4. As long as these is no evidence of disease in your body you are considered as NED and needs no more treatment as in RCC the drugs can have effect only after the met is large enough. In this case the patient is stage four and NED. Drs usually have a closer look at stage four patients and check them more regularly that's the only difference, we have some NED stage four members who may chime in.

    Forough

     

  • APny
    APny Member Posts: 1,995 Member
    foroughsh said:

    Hd67
    Once the RCC comes back,

    Hd67

    Once the RCC comes back, then the patient's stage is 4. As long as these is no evidence of disease in your body you are considered as NED and needs no more treatment as in RCC the drugs can have effect only after the met is large enough. In this case the patient is stage four and NED. Drs usually have a closer look at stage four patients and check them more regularly that's the only difference, we have some NED stage four members who may chime in.

    Forough

     

    I remembered reading

    I remembered reading somewhere that the stage does not change if there's recurrence so I went to search and found this on the Cancer.Net website.

    The stage of a cancer does not change over time. If the cancer comes back or spreads to another part of the body, it has the same stage as the first diagnosis. The more recent information about the size and spread of the cancer is added to the stage.”

    I'm not sure if everyone follows this protocol or if some docs restage it when they find a recurrence. From the report above it seems as though the staging was not changed but recurrence was added to it.

    http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/stages-cancer

     

  • NewDay
    NewDay Member Posts: 272
    APny said:

    I remembered reading

    I remembered reading somewhere that the stage does not change if there's recurrence so I went to search and found this on the Cancer.Net website.

    The stage of a cancer does not change over time. If the cancer comes back or spreads to another part of the body, it has the same stage as the first diagnosis. The more recent information about the size and spread of the cancer is added to the stage.”

    I'm not sure if everyone follows this protocol or if some docs restage it when they find a recurrence. From the report above it seems as though the staging was not changed but recurrence was added to it.

    http://www.cancer.net/navigating-cancer-care/diagnosing-cancer/stages-cancer

     

    I was told by my oncologist and the RCC expert I saw at MD Anderson that now that my RCC has recurred, I am now stage IV and that is what all of my medical records say.

    I found this information on the website for the National Cancer Institute.  These paragraphs are taken from different parts of the same page and seem a little contradictory.

    "A cancer is always referred to by the stage it was given at diagnosis, even if it gets worse or spreads. New information about how a cancer changes over time simply gets added on to the original stage designation. The cancer stage designation doesn’t change (even though the cancer itself might) because survival statistics and information on treatment by stage for specific cancer types are based on the original cancer stage at diagnosis."

    "Doctors may reassess a person’s cancer after their treatment has been completed to determine how the cancer responded to treatment. Such a reassessment, or restaging, may also be done when a cancer has recurred and may require more treatment. This reassessment involves the same tests that were done when the cancer was first diagnosed. After these tests, the doctor may assign a new stage to the cancer. The new stage will be preceded by an “r” to indicate that it reflects the restaging. The original stage at diagnosis does not change."

     

  • APny
    APny Member Posts: 1,995 Member
    NewDay said:

    I was told by my oncologist and the RCC expert I saw at MD Anderson that now that my RCC has recurred, I am now stage IV and that is what all of my medical records say.

    I found this information on the website for the National Cancer Institute.  These paragraphs are taken from different parts of the same page and seem a little contradictory.

    "A cancer is always referred to by the stage it was given at diagnosis, even if it gets worse or spreads. New information about how a cancer changes over time simply gets added on to the original stage designation. The cancer stage designation doesn’t change (even though the cancer itself might) because survival statistics and information on treatment by stage for specific cancer types are based on the original cancer stage at diagnosis."

    "Doctors may reassess a person’s cancer after their treatment has been completed to determine how the cancer responded to treatment. Such a reassessment, or restaging, may also be done when a cancer has recurred and may require more treatment. This reassessment involves the same tests that were done when the cancer was first diagnosed. After these tests, the doctor may assign a new stage to the cancer. The new stage will be preceded by an “r” to indicate that it reflects the restaging. The original stage at diagnosis does not change."

     

    That's pretty much what I

    That's pretty much what I found at another site also. It's a bit confusing. I guess it's up to the physician whether to restage after treatment?

    " The formal stage of a cancer does not change over time, even if the cancer progresses. A cancer that returns or spreads is still referred to by the stage it was given when it first diagnosed. In certain cases, after a period of remission a doctor might restage the cancer, but this does not happen very often.”

    https://cancerstaging.org/references-tools/Pages/What-is-Cancer-Staging.aspx

    New Day, does your stage 4 have an "r" next to it to indicate that it was restaged?

  • NewDay
    NewDay Member Posts: 272
    APny said:

    That's pretty much what I

    That's pretty much what I found at another site also. It's a bit confusing. I guess it's up to the physician whether to restage after treatment?

    " The formal stage of a cancer does not change over time, even if the cancer progresses. A cancer that returns or spreads is still referred to by the stage it was given when it first diagnosed. In certain cases, after a period of remission a doctor might restage the cancer, but this does not happen very often.”

    https://cancerstaging.org/references-tools/Pages/What-is-Cancer-Staging.aspx

    New Day, does your stage 4 have an "r" next to it to indicate that it was restaged?

    No.  My records just say Stage IV.  I think doctors would have to always say Stage IV in the records or my insurance company would never approve anything if it still said Stage II.  I will as my doctor about this at my next visit if I can remember.

  • APny
    APny Member Posts: 1,995 Member
    NewDay said:

    No.  My records just say Stage IV.  I think doctors would have to always say Stage IV in the records or my insurance company would never approve anything if it still said Stage II.  I will as my doctor about this at my next visit if I can remember.

    Yes, it makes sense about the

    Yes, it makes sense about the insurance so perhaps that's why he did it. I'm curious what he'll say when you ask.

  • todd121
    todd121 Member Posts: 1,448 Member
    Staging

    If you read this carefully, it's explained very well on the American Cancer Society Website.

    http://www.cancer.org/cancer/kidneycancer/detailedguide/kidney-cancer-adult-staging

    You have T, N and M. T has to do with the PRIMARY tumor. T1-4. N has to do with lymph node involvement. M has to do with distant mets (mets to lymph nodes or distant organs).

    So, your T1 always stays a T1.

    You're overall stage is determined by T, N and M.

    T1, N0, M0 means you had a small, wholly contained tumor in the kidney and no lymph glands were involved and no distant mets were involved. This is Stage 1.

    However, if later a met is discovered, say in your lung, now you're T1, N0, M1. That moves you to Stage 4.

    Todd

  • todd121
    todd121 Member Posts: 1,448 Member
    More Staging

    I'm confused by the discussion above about restaging. All the docs I've talked to (mine and others at kidney cancer meetings), once the cancer has spread they call it "metastatic" or "recurrent" kidney cancer. I think at that point they sort of stop talking about staging altogether.

    Staging is a prognostic tool usually applied to an initial diagnosis. Those of us with "recurrent" or "metastatic" kidney cancer are in the same boat as a recently diagnosed Stage 4. Perhaps that's where the confusion comes in?

    For all purposes we are the same in regards to staging. We have kidney cancer that has spread to other parts of the body.

    Regards,

    Todd

  • mrou50
    mrou50 Member Posts: 389 Member
    Staging

    I am not an expert but I do know what my ONC told me, that when the cancer leaves the original area (metastis)  the stage changes in the case of RCC he said as soon as it was found in my lungs I was moved to stage IV and that is kind of how I read it.

     

    Mark

  • Hd67xlch
    Hd67xlch Member Posts: 151 Member
    mrou50 said:

    Staging

    I am not an expert but I do know what my ONC told me, that when the cancer leaves the original area (metastis)  the stage changes in the case of RCC he said as soon as it was found in my lungs I was moved to stage IV and that is kind of how I read it.

     

    Mark

    Friday when I went to see my

    Onc/Hema DR he did not change me  from stage 1 to stage 4, he said that Id always be stage 1 even though it spread to my lung, although he did add it on my staging sheet from recurrent to metastasized. The only reason I was even asking him, was Im thinking I may want to retire and apply for SSD (Im 57). This was my 2nd visit with this guy and he originally wanted to put me on Sutent before my pathology results came back from my lobectomy 16 days ago. I swear he seemed dissapointed that my results were good and he couldnt put me on the Sutent, it seems to me all he is concerned with is statistics and and keeping the staging low(does it make them look better if they keep the staging low?). Anyways I will never go back to him, my urologist will handle my  4 month nuclear bone scan and ct scans, and if anything shows up I will find another oncologist.

    Good luck to all

     

     

  • Srashedb
    Srashedb Member Posts: 482 Member
    Hd67xlch said:

    Friday when I went to see my

    Onc/Hema DR he did not change me  from stage 1 to stage 4, he said that Id always be stage 1 even though it spread to my lung, although he did add it on my staging sheet from recurrent to metastasized. The only reason I was even asking him, was Im thinking I may want to retire and apply for SSD (Im 57). This was my 2nd visit with this guy and he originally wanted to put me on Sutent before my pathology results came back from my lobectomy 16 days ago. I swear he seemed dissapointed that my results were good and he couldnt put me on the Sutent, it seems to me all he is concerned with is statistics and and keeping the staging low(does it make them look better if they keep the staging low?). Anyways I will never go back to him, my urologist will handle my  4 month nuclear bone scan and ct scans, and if anything shows up I will find another oncologist.

    Good luck to all

     

     

    Staging

    I would change doctors since it is basic 101 cancer that once cancer recurs, it is alwaystage 4; it may never show up again but it is stage 4.

  • foxhd
    foxhd Member Posts: 3,181 Member
    Srashedb said:

    Staging

    I would change doctors since it is basic 101 cancer that once cancer recurs, it is alwaystage 4; it may never show up again but it is stage 4.

    where are the nurses?

    It sounds like the doctor was staging an open wound. I believe they stay the same even after it gets worse.