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Grading

Matt5
Matt5 Member Posts: 3
Apologies for rev-visiting a subject which I'm sure must have been discussed many times in the past. However I am a little worried about the discrepancy between the advice given by my physician and the UCLA grading survival statistics shown in the below link :

Kidneycancer.ucla.edu/body.cfm?id=37

The UCLA PowerPoint in this presentation gives five year survival statistics for Grade 2 as 68 % and Grade 3 as 42 % , neither of which seem compatible with all the other statistics I have seen. 10 year Grade 3 survival is stated as 24%.

I am advised that my Grade 3, clear cell , 3.4 cm tumor is staged as 1a.. It was fully excised with negative margins. On the Mayo Clinic system this is ' low risk' and my follow up has been scheduled accordingly with the first scan in six months. If the UCLA statistics are correct a Grade 3 , regardless of size/stage looks very high risk and even Grade 2 looks sort of intermediate-high risk.

I had been quite sanguine about what appeared to be a relatively optimistic scenario with stage 1 a . I'm now rather perturbed to say the least.

Any advice very welcome from those with more knowledge of this subject. Am I right to be concerned or is it more of a case of lies, damned lies and grading statistics ?

Matt

Comments

  • dhs1963
    dhs1963 Member Posts: 513
    I think you are missing part of it
    In the example which shows grading as a factor, it is just grading. They are not including size.

    When factoring stage (size) and grade, 1a is low risk regardless of grade.

    A 3.4 cm grade 3 stage 1 has a 5 survival rate of 95%....
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    dhs1963 said:

    I think you are missing part of it
    In the example which shows grading as a factor, it is just grading. They are not including size.

    When factoring stage (size) and grade, 1a is low risk regardless of grade.

    A 3.4 cm grade 3 stage 1 has a 5 survival rate of 95%....

    Prognosis
    Matt, you can pretty well assume that having cancer is a thing of the past for you and your risk is now no worse than for anyone else on the street.
    The "calculators" are complete rubbish, in respect of individual patients, which is why they are hedged about with qualifications on their use when you go into them.
    Quite apart from statistical invalidity, you'll notice that the UCLA stuff is many years old and the data on which it's based is even more dated. The world has changed a lot in the interim but in any case the extrapolations to individual cases were wrong-headed even when they were new.

    Your situation is about as close as it's possible to get to not having had cancer in the first place, so stop worrying.
  • Limelife50
    Limelife50 Member Posts: 476
    You should be fine Matt
    Trust me Matt if i could i would trade you my 5cm tumor for your 3.4cm tumor and i would throw in my motorcycle and a 12 pack of beer,make that a cold 12 pack.Just based on size Matt anything 3cm and under almost never spreads and this includes all grades so yours is 3.4 i think close enough
  • adman
    adman Member Posts: 336

    You should be fine Matt
    Trust me Matt if i could i would trade you my 5cm tumor for your 3.4cm tumor and i would throw in my motorcycle and a 12 pack of beer,make that a cold 12 pack.Just based on size Matt anything 3cm and under almost never spreads and this includes all grades so yours is 3.4 i think close enough

    question???

    At what stage do the percentages referenced herein begin to go down?

    A 3cm is at 95% - What is a 4, 5 6 and beyond?

    Are you saying that Stage is more/ less important than grade?

    Are you pulling this data from a source we can all take a look at?

    Thanks in advance.
  • dhs1963
    dhs1963 Member Posts: 513
    adman said:

    question???

    At what stage do the percentages referenced herein begin to go down?

    A 3cm is at 95% - What is a 4, 5 6 and beyond?

    Are you saying that Stage is more/ less important than grade?

    Are you pulling this data from a source we can all take a look at?

    Thanks in advance.

    Stage is much more important than grade
    These prognoses estimates are based on data that is older...based on statistical analysis.

    There has been a lot of improvements in treatments, so outcomes are better.

    With that said, according to the calculators, a 5 cm tumor grade 1 is 93%.
    Mine is (was) grade 4, which is more like 85% survival over 5 years. And it is probably better. I would say what the calculators show as survival is more likely the probability of recurrence/metastases. But I am guessing. 10 years ago, met pretty much was really bad. not so much today.
  • ten62z
    ten62z Member Posts: 7
    dhs1963 said:

    Stage is much more important than grade
    These prognoses estimates are based on data that is older...based on statistical analysis.

    There has been a lot of improvements in treatments, so outcomes are better.

    With that said, according to the calculators, a 5 cm tumor grade 1 is 93%.
    Mine is (was) grade 4, which is more like 85% survival over 5 years. And it is probably better. I would say what the calculators show as survival is more likely the probability of recurrence/metastases. But I am guessing. 10 years ago, met pretty much was really bad. not so much today.

    Stage/Grade
    New to all this. Diagnosed post op Stage 3 grade 3 clear cell. Partial nephrectomy (25%) with clear margins June 2012 at MSKCC. Where is everyone finding survival percentages? Just started Pazo (or plecebo) trial. Doctor said Pazo decreases the chances of reoccurrence by an additional 15%. I'll never know if I'm on Pazo or plecebo unless the cancer comes back. Can someone please educate me?
  • ten62z
    ten62z Member Posts: 7
    ten62z said:

    Stage/Grade
    New to all this. Diagnosed post op Stage 3 grade 3 clear cell. Partial nephrectomy (25%) with clear margins June 2012 at MSKCC. Where is everyone finding survival percentages? Just started Pazo (or plecebo) trial. Doctor said Pazo decreases the chances of reoccurrence by an additional 15%. I'll never know if I'm on Pazo or plecebo unless the cancer comes back. Can someone please educate me?

    Stage/Grade
    Forgot to mention. Dr. said 50/50 chance of reoccurrence
  • growler9
    growler9 Member Posts: 48
    ten62z said:

    Stage/Grade
    Forgot to mention. Dr. said 50/50 chance of reoccurrence

    Calculator
    http://labs.fccc.edu/nomograms/nomogram.php?id=8&audience=1&status=1

    This is the address for the Fox - Chase Cancer Center Clear Cell RCC recurrence calculator.

    Alan
  • DMike
    DMike Member Posts: 259
    growler9 said:

    Calculator
    http://labs.fccc.edu/nomograms/nomogram.php?id=8&audience=1&status=1

    This is the address for the Fox - Chase Cancer Center Clear Cell RCC recurrence calculator.

    Alan

    Calculator
    After initially worrying and worrying about the calculators, these days I agree with Tex's response.
    --David
  • growler9
    growler9 Member Posts: 48
    DMike said:

    Calculator
    After initially worrying and worrying about the calculators, these days I agree with Tex's response.
    --David

    Yeah, I agree.
    I am stage 3/grade 3 on the left and stage 1/ grade 2 on the right. The Urologist said I was cured and I believe him. My cancer was found while being evaluated for a heart transplant. I have to be cancer free for 5 years to get back on the list so I have no choice but to believe him. Had 1 year scans 10 days ago. Haven't heard results but figuring I only have 4 years to go. Having died twice from V-fib and having my Urologist saying take your cancer and go home, you'll probably live for 2 years but your going to die during the operation and surviving 2 open partials. I can tell you it's not worth worrying about something that may never happen.

    I can't drive anymore or work or play but I'm not going to sit around worrying about nothing. My 2 cents. Alan
  • nyc_girl
    nyc_girl Member Posts: 27
    growler9 said:

    Yeah, I agree.
    I am stage 3/grade 3 on the left and stage 1/ grade 2 on the right. The Urologist said I was cured and I believe him. My cancer was found while being evaluated for a heart transplant. I have to be cancer free for 5 years to get back on the list so I have no choice but to believe him. Had 1 year scans 10 days ago. Haven't heard results but figuring I only have 4 years to go. Having died twice from V-fib and having my Urologist saying take your cancer and go home, you'll probably live for 2 years but your going to die during the operation and surviving 2 open partials. I can tell you it's not worth worrying about something that may never happen.

    I can't drive anymore or work or play but I'm not going to sit around worrying about nothing. My 2 cents. Alan

    RCC: We are on to you!
    A lot of us are here because our RCC was discovered by chance while doctors were looking for something else. I think that freaks us out a little (I know it freaks ME out). The good news is that now we have medical teams who are actively looking out for a recurrence at regular intervals. We won't need another car accident/kidney stone/chest pain, etc. to befall us in order to get our kidneys checked. And we are more educated about this disease. That has to be good, right?

    nyc_girl (stage 1, grade 3)
  • dhs1963
    dhs1963 Member Posts: 513
    nyc_girl said:

    RCC: We are on to you!
    A lot of us are here because our RCC was discovered by chance while doctors were looking for something else. I think that freaks us out a little (I know it freaks ME out). The good news is that now we have medical teams who are actively looking out for a recurrence at regular intervals. We won't need another car accident/kidney stone/chest pain, etc. to befall us in order to get our kidneys checked. And we are more educated about this disease. That has to be good, right?

    nyc_girl (stage 1, grade 3)

    Before scans
    Before there was scanning technology, the first indication of kidney cancer was often when it was too late. More people died of the cancer than now. The flip side is, there were a lot fewer diagnoses because some people with RCC would have died of something else first.

    What I do know is that unless a causative gene is identified, my daughter (now 10), will be getting scans starting at about 30. I am the third generation to have the cancer. I would love to be the last.
  • garym
    garym Member Posts: 1,647
    growler9 said:

    Yeah, I agree.
    I am stage 3/grade 3 on the left and stage 1/ grade 2 on the right. The Urologist said I was cured and I believe him. My cancer was found while being evaluated for a heart transplant. I have to be cancer free for 5 years to get back on the list so I have no choice but to believe him. Had 1 year scans 10 days ago. Haven't heard results but figuring I only have 4 years to go. Having died twice from V-fib and having my Urologist saying take your cancer and go home, you'll probably live for 2 years but your going to die during the operation and surviving 2 open partials. I can tell you it's not worth worrying about something that may never happen.

    I can't drive anymore or work or play but I'm not going to sit around worrying about nothing. My 2 cents. Alan

    Congrats on year one!!!
    Hi Alan,

    Just gotta say what a great attitude you have, and I couldn't agree more! I've been battling A-fib for about a month and they keep telling me to be glad its not "V" which is far more serious, but you've survived it twice and remained positive, amazing. Here's hoping the next four years pass quickly for you.

    Stay strong,

    Gary
  • donna_lee
    donna_lee Member Posts: 1,018
    garym said:

    Congrats on year one!!!
    Hi Alan,

    Just gotta say what a great attitude you have, and I couldn't agree more! I've been battling A-fib for about a month and they keep telling me to be glad its not "V" which is far more serious, but you've survived it twice and remained positive, amazing. Here's hoping the next four years pass quickly for you.

    Stay strong,

    Gary

    Stats with a grain of salt
    We are all evidence of thumbing a nose at statistics. They are changing as we "age" into this stage of existence.

    After an ultrasound for maybe gall stones in May 2006, I was told I had a couple of masses in my kidney and liver-Stage IV cancer; that the only option was palliative care; and survival at that point was 5-7 months. With only a 5% survival rate. Wow! I didn't want to die at Christmas time. Besides, I had a another new granddaughter on the way, and my daughter and family had just moved back stateside after 15 years in Kuwait.

    A CT and Bone scan later, appointments with 3 specialists in one room, and hope that "they could take care of it with surgery," a loooooooong surgery later (11 1/2 hrs), and here I am...with a history of Stage IV, T2M2N1, Fuhrman Grade III-!V/!V, Clear Cell RCC; two separate recurrences in single nodes in subsequent years (surgically removed)...and still here, bugging you guys.

    The good news in all this is that with earlier intervention (read accidental discovery) of kidney cancer, we are changing the statistics. In the earlier days, my son was focussed on survival statistics, and I read them, but tried not to dwell on them. Good thing, too, because they can really depress you. So I read thru stuff and take it under advisement-then get on with what I did last Saturday. Which was to take the 6 & 8 year olds to Subway for lunch, go to the Pottery Co. to paint greenware, stop at a shop to get my orange Oregon State shirt and come out with a "T" and a few assorted stuffed animals, go to 2 different playground parks, stop at 7-11 for slushies, and deposit them back with their parents before heading home to put my feet up.

    Have a good week.
    Donna
  • pjune127
    pjune127 Member Posts: 127
    donna_lee said:

    Stats with a grain of salt
    We are all evidence of thumbing a nose at statistics. They are changing as we "age" into this stage of existence.

    After an ultrasound for maybe gall stones in May 2006, I was told I had a couple of masses in my kidney and liver-Stage IV cancer; that the only option was palliative care; and survival at that point was 5-7 months. With only a 5% survival rate. Wow! I didn't want to die at Christmas time. Besides, I had a another new granddaughter on the way, and my daughter and family had just moved back stateside after 15 years in Kuwait.

    A CT and Bone scan later, appointments with 3 specialists in one room, and hope that "they could take care of it with surgery," a loooooooong surgery later (11 1/2 hrs), and here I am...with a history of Stage IV, T2M2N1, Fuhrman Grade III-!V/!V, Clear Cell RCC; two separate recurrences in single nodes in subsequent years (surgically removed)...and still here, bugging you guys.

    The good news in all this is that with earlier intervention (read accidental discovery) of kidney cancer, we are changing the statistics. In the earlier days, my son was focussed on survival statistics, and I read them, but tried not to dwell on them. Good thing, too, because they can really depress you. So I read thru stuff and take it under advisement-then get on with what I did last Saturday. Which was to take the 6 & 8 year olds to Subway for lunch, go to the Pottery Co. to paint greenware, stop at a shop to get my orange Oregon State shirt and come out with a "T" and a few assorted stuffed animals, go to 2 different playground parks, stop at 7-11 for slushies, and deposit them back with their parents before heading home to put my feet up.

    Have a good week.
    Donna

    You rock!
    So impressed with your attitude and I try every day to do the same. Some days are harder than others, but overall it seems only sensible to live each day looking for the best in it! I had a scan yesterday....results tomorrow. Was on Sutent for 10 months and now Inlyta for 2 months. Looking and praying for good news. Wish I had all of your positive energy for tomorrow!
  • MedScanMan
    MedScanMan Member Posts: 107
    pjune127 said:

    You rock!
    So impressed with your attitude and I try every day to do the same. Some days are harder than others, but overall it seems only sensible to live each day looking for the best in it! I had a scan yesterday....results tomorrow. Was on Sutent for 10 months and now Inlyta for 2 months. Looking and praying for good news. Wish I had all of your positive energy for tomorrow!

    Hope this helps guys!!!!
    This link helped me a lot on this subject.

    http://kidneycancer.ucla.edu/body.cfm?id=37
  • garym
    garym Member Posts: 1,647
    donna_lee said:

    Stats with a grain of salt
    We are all evidence of thumbing a nose at statistics. They are changing as we "age" into this stage of existence.

    After an ultrasound for maybe gall stones in May 2006, I was told I had a couple of masses in my kidney and liver-Stage IV cancer; that the only option was palliative care; and survival at that point was 5-7 months. With only a 5% survival rate. Wow! I didn't want to die at Christmas time. Besides, I had a another new granddaughter on the way, and my daughter and family had just moved back stateside after 15 years in Kuwait.

    A CT and Bone scan later, appointments with 3 specialists in one room, and hope that "they could take care of it with surgery," a loooooooong surgery later (11 1/2 hrs), and here I am...with a history of Stage IV, T2M2N1, Fuhrman Grade III-!V/!V, Clear Cell RCC; two separate recurrences in single nodes in subsequent years (surgically removed)...and still here, bugging you guys.

    The good news in all this is that with earlier intervention (read accidental discovery) of kidney cancer, we are changing the statistics. In the earlier days, my son was focussed on survival statistics, and I read them, but tried not to dwell on them. Good thing, too, because they can really depress you. So I read thru stuff and take it under advisement-then get on with what I did last Saturday. Which was to take the 6 & 8 year olds to Subway for lunch, go to the Pottery Co. to paint greenware, stop at a shop to get my orange Oregon State shirt and come out with a "T" and a few assorted stuffed animals, go to 2 different playground parks, stop at 7-11 for slushies, and deposit them back with their parents before heading home to put my feet up.

    Have a good week.
    Donna

    Sodium I can agree with...
    Donna,

    I can only echo pj's sentiment, YOU ROCK!!! What a great attitude and spirit you have, we are lucky to have you here and I hope you hang around "bugging us" for another 50 years or so! The "little ones" must love you to pieces, I've always felt that as grand parents a big part of our job is to wind 'em up and send 'em home.

    Rock on,

    Gary