Clear Cell Renal Carcinoma

budd
budd Member Posts: 3
in Kidney Cancer #1

I had a radical Nephrecomy on my right kidney on Aug. 2. I had a 9.8cm tumor and was diagnoised as Clear Cell renal Carcinoma Grade IV.

The have found no other cancer but the Lymphovascular was suspicious for invasion. Becaue of this I have to have CT Scans every three months.

We were told that Clear Cell is least likely to return. As anyone had this and it did return? If so where?

I feel great and am slowly getting my strength back. I am a Missionary in a 3rd world country so I am waiting to get more stregth before I return.

Comments

  • MDCinSC
    MDCinSC Member Posts: 574
    #2
    Hello Budd!

    I am very sorry you have been initiated into a club that you didn't want to join.  In that, you are like every person here.  My own radical nephrectomy was May 14. My tumor was 4.5 cm T1b Grade 3.Given the size, you are looking at a Stage 2, possibly going to stage 3a if it does involve the vascular system. Thats my best guess.  Others here will correct me of a certainty if I am off.

    Please keep this one fact in mind through all this.  There are many here with tumors larger and smaller who have been here a long time and anticipate being here even longer!  Me included. There have been many strides in the treatment of this disease of late and new strides are taking place with regularity.

    The grading of your tumor should be the area that you should take quite seriously.  Tumor grading is a four digit scale, ranging from least aggressive at grade 1 & 2, to the most aggressive, grades 3 & 4.  You have been given good advice, I think, for the quarterly checkups and scans.  I am getting quarterly check ups as well.

    I'll leave it to wiser heads to discuss the possibility of mets. At grade 4 though, your chances are more elevated I believe. I would also recommend you locate and consult a medical oncologist with a background in RCC very soon.

    Could you give us a little more information about you and the pathology report, if you don't mind?  As I said, there are some pretty heavy hitters here who can give you far more in depth advice and details.

    Come here often.  We re a cohesive, caring group.  Now you're family!  Don't be bashful!

    Michael

     

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #3
    Prospects

    Budd, you're doing the right thing in giving yourself plenty of time to recover. You certainly shouldn't contemplate return abroad before you're very well recovered and I think it's questionable whether you should return to that work at all.

    The grade of your cancer is comparatively unimportant, relative to the stage - have you been told what stage you're at?  With a large tumor and suspicion of lymphovascular invasion, you're going to be at least stage 3 and probably 4.  Your grade of 4 is not too encouraging either. 

    Assuming that you are stage 4 and grade 4, the question is not whether you will have recurrence - you surely will - but just a matter of how soon and where.  I suspect you misunderstood when you say that you were told that clear cell is least likely to return, since that is definitely not correct.   In any case, it will be very surprising indeed if your cancer doesn't return.

    Until we know more about your pathology report and some other factors, it's not worth guessing where you are most likely to get a recurrence but possible sites are in the area of the tumor and kidney they've just removed, also your lungs amd your liver.  However, in view of the lymphovascular situation, the retroperitoneal lymph nodes are likely to be the first site.  Other possibilities are bones and brain, though both are less likely than lungs, liver and lymph nodes.

    The crucial factor will be catching a recurrence as early as possible and then having immediate expert treatment.  That is not likely to be possible in a Third World country, which is why I say I think you need to reconsider where you will continue your work.

    The fact that you are to have 3 monthly CT scans bears out your doctors' appraisal of the seriousness of your illness.  If you are very lucky (and you may be) you may escape return of your cancer but I reckon that's so unlikely that you need to do some serious thinking about your future plans in following your calling.

     

     

     

  • MDCinSC
    MDCinSC Member Posts: 574
    #4
    MDCinSC said:

    Hello Budd!

    I am very sorry you have been initiated into a club that you didn't want to join.  In that, you are like every person here.  My own radical nephrectomy was May 14. My tumor was 4.5 cm T1b Grade 3.Given the size, you are looking at a Stage 2, possibly going to stage 3a if it does involve the vascular system. Thats my best guess.  Others here will correct me of a certainty if I am off.

    Please keep this one fact in mind through all this.  There are many here with tumors larger and smaller who have been here a long time and anticipate being here even longer!  Me included. There have been many strides in the treatment of this disease of late and new strides are taking place with regularity.

    The grading of your tumor should be the area that you should take quite seriously.  Tumor grading is a four digit scale, ranging from least aggressive at grade 1 & 2, to the most aggressive, grades 3 & 4.  You have been given good advice, I think, for the quarterly checkups and scans.  I am getting quarterly check ups as well.

    I'll leave it to wiser heads to discuss the possibility of mets. At grade 4 though, your chances are more elevated I believe. I would also recommend you locate and consult a medical oncologist with a background in RCC very soon.

    Could you give us a little more information about you and the pathology report, if you don't mind?  As I said, there are some pretty heavy hitters here who can give you far more in depth advice and details.

    Come here often.  We re a cohesive, caring group.  Now you're family!  Don't be bashful!

    Michael

     

    As I said,

    Wiser heads than I will be along!  Texas Wedge is a case in point!

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #5

    Budd, 

     

      As you read the posts and  check the literature you will see that there is a chance for recurrance of a 9.8 cm tumor although I believe there are those with larger tumors who have had no recurrance. My thoughts would be to wait at least a couple of years before going back to a 3rd world country as you will need the availability of regular scans as well as the avalability of follow up treatment to nip the little bugger in the bud if it should reappear.

     

    Icemantoo

  • Eskimo lily
    Eskimo lily Member Posts: 43
    #6
    icemantoo said:

    Budd, 

     

      As you read the posts and  check the literature you will see that there is a chance for recurrance of a 9.8 cm tumor although I believe there are those with larger tumors who have had no recurrance. My thoughts would be to wait at least a couple of years before going back to a 3rd world country as you will need the availability of regular scans as well as the avalability of follow up treatment to nip the little bugger in the bud if it should reappear.

     

    Icemantoo

    Tumor grading

    Hi everyone,

     

    my mom just had a left radical nephrectomy on August 1st. We also received a copy of her pathology report, but we are not quite sure how to interpret it.

     

    it says as per the AJCC 2010 grading system, the tumor is staged at pT3a. Is that different from the Fuhrman nuclear grade? And how can a grade be a 3 or a 4??) The report states:

     

     

    Fuhrman nuclear grade: nuclear grade III/IV 

    tumor size: greatest diameter is 8cm

    local invasion (for renal cortical types): extends through renal capsupe but confined within gerota's fascias, involves renal sinus fat, involves renal hilar fat

    renal vein invasion: identified, extensive involvement of muscular branches of the renal vein in the renal sinus area is iidentified

    surgical margins: free of tumor

    non neoplastic kidney: mild chronic interstitial inflammation. Compression related changes seen in renal parachyma adjacent to tumor

    adrenal gland: not identified

    lymph nodes: free of tumor

    number of nodes examined: 1

    staging for renal cell carcinoma/oncocytoma: pT3a tumor invades the adrenal gland or perinephric tissues but not beyond gerota's fascia.

     

     

     

    Im not sure if this is also a silly question, but when my mom had her first ct done, they said she had multiple nodules in her lungs and liver. They are saying that those are mets. How do they know for sure that they are mets? should she have a biopsy done to confirm? If so, we haven't heard anything about a biopsy yet. But, we are scheduled to start votrient on September 5th, which is out next appointment with our oncologist.

  • Eims
    Eims Member Posts: 423
    #7
    hi budd,  i think you need to

    hi budd,  i think you need to concentrate on you for a while now and give yourself a chance to recover and in doing this hopefully you will get back to the work you love.  i am sure there are lots of opportunities so do your good work where you live so that you can keep a better eye on your health and your future.  there are fabulous people here and sometimes its the one place that keeps you sane!!  

    eims x

  • GSRon
    GSRon Member Posts: 1,303 Member
    #8
    Eskimo lily said:

    Tumor grading

    Hi everyone,

     

    my mom just had a left radical nephrectomy on August 1st. We also received a copy of her pathology report, but we are not quite sure how to interpret it.

     

    it says as per the AJCC 2010 grading system, the tumor is staged at pT3a. Is that different from the Fuhrman nuclear grade? And how can a grade be a 3 or a 4??) The report states:

     

     

    Fuhrman nuclear grade: nuclear grade III/IV 

    tumor size: greatest diameter is 8cm

    local invasion (for renal cortical types): extends through renal capsupe but confined within gerota's fascias, involves renal sinus fat, involves renal hilar fat

    renal vein invasion: identified, extensive involvement of muscular branches of the renal vein in the renal sinus area is iidentified

    surgical margins: free of tumor

    non neoplastic kidney: mild chronic interstitial inflammation. Compression related changes seen in renal parachyma adjacent to tumor

    adrenal gland: not identified

    lymph nodes: free of tumor

    number of nodes examined: 1

    staging for renal cell carcinoma/oncocytoma: pT3a tumor invades the adrenal gland or perinephric tissues but not beyond gerota's fascia.

     

     

     

    Im not sure if this is also a silly question, but when my mom had her first ct done, they said she had multiple nodules in her lungs and liver. They are saying that those are mets. How do they know for sure that they are mets? should she have a biopsy done to confirm? If so, we haven't heard anything about a biopsy yet. But, we are scheduled to start votrient on September 5th, which is out next appointment with our oncologist.

    Hi Lily.. welcome to the club

    Hi Lily.. welcome to the club no one wants to join..  You may not like to hear it.. but those scans do not lie..  No need for biopsy when there are multiple Mets like that.  This is failry common with RCC.  The Lungs and other organs are where it shows up.  It can show up almost anywhere, at any time, but time will tell.  That said, there are some good drugs available..!   And more drugs in testing phases.   There are people living a lot of years with RCC.  Make sure you are seeing the right Onc.  There are many postings here that will help you learn what you need to know..  we all share here.. soon you will be sharing your knowledge too.

    Good Luck,

    Ron

  • DonMiller
    DonMiller Member Posts: 109
    #9
    Eims said:

    hi budd,  i think you need to

    hi budd,  i think you need to concentrate on you for a while now and give yourself a chance to recover and in doing this hopefully you will get back to the work you love.  i am sure there are lots of opportunities so do your good work where you live so that you can keep a better eye on your health and your future.  there are fabulous people here and sometimes its the one place that keeps you sane!!  

    eims x

    Hey Budd

    Don’t want to brag but I got ya beat by 2 CM’s on tumor size. I am not sure from your post if you have yet seen a renal oncologist.  If you have not it would be a good idea to see one as soon as possible.   These urologists are great at surgery but not generally skilled or experienced on giving an accurate prognosis, and formulating a treatment plan.  Also you may be eligible for clinical trials which you may or may not decide to do, but they usually are only available for a 60 to 90 day window after surgery. You should get all the facts.  Also try to stay away from reading on the internet, especially anything that is more than a few years old……..treatment is really progressing and anything older is worse than worthless because it can get you more anxious then you have to be, Also stay home!  I felt pretty good and tried to go back to work after a few weeks and it was a big mistake.  You have to let your body heal taking short walks, drinking a lot of water and resting. 

     

    Sorry you had to join this club but there are great people here and they have been a huge help to me in the past year. 

     

     

    Don

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