Fuhrman Grade IS VERY IMPORTANT - even for small tumors

I noticed another good discussion on this topic. When was last at the oncologist, I asked him to "re-tell" me some of the information he shared at an initial meeting - and I was finally in a place to process it.

He showed me a chart with 5-year survival rates for Kidney cancer. Yes, those with stage 1 tumors that are grade 1 or 2 do have a 95 or 99% 5-year surivival rate.

BUT, for those of use with small, stage 1 tumors that are grade 3 or 4, the 5-year survival rate drops to 65%.

I don't put this out there to scare folks, but to encourage those of us that had small, high-grade tumors to be especially vigilant in our follow-up care. It is not enough to say that surgery was our cure - be sure to see an oncologist and keep up the very close monitoring.
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Comments

  • SushiSharon
    SushiSharon Member Posts: 10
    Fuhrman Grade
    Hi Minnesota Girl. I'm brand new to all of this, and am actually writing from the hospital, where I was admitted for pancreatitis/gastrtitis. Incidentally, an 8.4 cm mass was found on CT on my upper left kidney, touching my spleen. Can you tell me about this "Grade" and what I should expect? I will be seeing my urologist next week, followed laparoscopic nephrectomy in a few weeks.
  • rae_rae
    rae_rae Member Posts: 300

    Fuhrman Grade
    Hi Minnesota Girl. I'm brand new to all of this, and am actually writing from the hospital, where I was admitted for pancreatitis/gastrtitis. Incidentally, an 8.4 cm mass was found on CT on my upper left kidney, touching my spleen. Can you tell me about this "Grade" and what I should expect? I will be seeing my urologist next week, followed laparoscopic nephrectomy in a few weeks.

    KC Association
    Sharon,

    The Kidney Cancer Association has a great deal of information. Here is a link to get you started. Also while you are there, navigate through the website and find the We Have Kidney Cancer booklet and download it. I printed it off and saved it. GREAT information to get you started.

    http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer
    This will let you know about staging, grading and different types of KC>

    Rae
  • LISAinTN
    LISAinTN Member Posts: 143
    Good info, MNGirl. You had
    Good info, MNGirl. You had your first set of scans/tests come back clean, we just have to pray for continued clear scans. Hugs!

    Blessings,
    Lisa
  • Limelife50
    Limelife50 Member Posts: 476
    I agree
    I posted a discussion topic last week concerning both grade and stage of our tumors,as I mentioned at the time my intentions were not to scare anyone,I just kind of felt there were a lot of emphases being put on the size of the tumor,but I feel the grade of the tumor can at the time of our dx have an affect on our long term prognosis
  • MikeK703
    MikeK703 Member Posts: 235
    Fuhrman Grade
    I've noticed that the folks who brought up Fuhrman Grading system remarked about not intending to scare or alarm anyone. They shouldn't worry about that. All of us need to be realistic and as knowledgeable as possible. I for one, welcome any information about kidney cancer and the battle I am facing in the near and long term. Knowledge is power, as they say.

    I've quoted below from the UCLA kidney cancer site. Here is the web page:
    http://kidneycancer.ucla.edu/body.cfm?id=37

    Note that in addition to staging and grading, excellent and poor health are also factors in the system.

    "There are two common staging systems for RCC, the TNM [tumor-node-metastasis] System and the New University of California Los Angeles Integrated Staging System (UISS). The Fuhrman Grading System is a system used to describe how kidney tumors appear under the microscope.

    "The New UCLA Integrated Staging System (UISS) is a more complex but probably more accurate system that incorporates the TNM staging systems, a person's overall health and the Fuhrman grade of the tumor.

    "In the UISS system: Patients without any tumor spread are divided into three groups: low risk, intermediate risk and high risk.

    "The Low Risk group is considered Stage I; are in excellent health other than the cancer and have a low Fuhrman grade tumor.
    The Intermediate Risk group is all others, without any spread.
    The High Risk group is either Stage III (but without lymph node spread), in poor health and have a high Fuhrman grade score; or Stage IV (without any spread, T4, N0, M0).
    The five-year cancer-specific survival (only deaths from cancer) for the low risk group is 91%, for the intermediate risk group is 80%, and for the high risk group is 55%."

    Mike
  • foxhd
    foxhd Member Posts: 3,181
    MikeK703 said:

    Fuhrman Grade
    I've noticed that the folks who brought up Fuhrman Grading system remarked about not intending to scare or alarm anyone. They shouldn't worry about that. All of us need to be realistic and as knowledgeable as possible. I for one, welcome any information about kidney cancer and the battle I am facing in the near and long term. Knowledge is power, as they say.

    I've quoted below from the UCLA kidney cancer site. Here is the web page:
    http://kidneycancer.ucla.edu/body.cfm?id=37

    Note that in addition to staging and grading, excellent and poor health are also factors in the system.

    "There are two common staging systems for RCC, the TNM [tumor-node-metastasis] System and the New University of California Los Angeles Integrated Staging System (UISS). The Fuhrman Grading System is a system used to describe how kidney tumors appear under the microscope.

    "The New UCLA Integrated Staging System (UISS) is a more complex but probably more accurate system that incorporates the TNM staging systems, a person's overall health and the Fuhrman grade of the tumor.

    "In the UISS system: Patients without any tumor spread are divided into three groups: low risk, intermediate risk and high risk.

    "The Low Risk group is considered Stage I; are in excellent health other than the cancer and have a low Fuhrman grade tumor.
    The Intermediate Risk group is all others, without any spread.
    The High Risk group is either Stage III (but without lymph node spread), in poor health and have a high Fuhrman grade score; or Stage IV (without any spread, T4, N0, M0).
    The five-year cancer-specific survival (only deaths from cancer) for the low risk group is 91%, for the intermediate risk group is 80%, and for the high risk group is 55%."

    Mike

    Fuhrman grade.
    Gulp...Thank god for MDX-1106. I intend to impact those stats with a positive change.
    I just changed the fluids in my Harley. I didn't do it for the next owner.
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    MikeK703 said:

    Fuhrman Grade
    I've noticed that the folks who brought up Fuhrman Grading system remarked about not intending to scare or alarm anyone. They shouldn't worry about that. All of us need to be realistic and as knowledgeable as possible. I for one, welcome any information about kidney cancer and the battle I am facing in the near and long term. Knowledge is power, as they say.

    I've quoted below from the UCLA kidney cancer site. Here is the web page:
    http://kidneycancer.ucla.edu/body.cfm?id=37

    Note that in addition to staging and grading, excellent and poor health are also factors in the system.

    "There are two common staging systems for RCC, the TNM [tumor-node-metastasis] System and the New University of California Los Angeles Integrated Staging System (UISS). The Fuhrman Grading System is a system used to describe how kidney tumors appear under the microscope.

    "The New UCLA Integrated Staging System (UISS) is a more complex but probably more accurate system that incorporates the TNM staging systems, a person's overall health and the Fuhrman grade of the tumor.

    "In the UISS system: Patients without any tumor spread are divided into three groups: low risk, intermediate risk and high risk.

    "The Low Risk group is considered Stage I; are in excellent health other than the cancer and have a low Fuhrman grade tumor.
    The Intermediate Risk group is all others, without any spread.
    The High Risk group is either Stage III (but without lymph node spread), in poor health and have a high Fuhrman grade score; or Stage IV (without any spread, T4, N0, M0).
    The five-year cancer-specific survival (only deaths from cancer) for the low risk group is 91%, for the intermediate risk group is 80%, and for the high risk group is 55%."

    Mike

    Thanks for the info
    Mike - Thanks for your thoughtful response. I had not seen the UISS system, but it is good information to have. I agree - knowledge IS power. That's why we are here for each other!!
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    foxhd said:

    Fuhrman grade.
    Gulp...Thank god for MDX-1106. I intend to impact those stats with a positive change.
    I just changed the fluids in my Harley. I didn't do it for the next owner.

    Go for it!
    I didn't see attitude and spirit in the calculation, but I'm sure you have it and it counts for something!
  • Michael6701
    Michael6701 Member Posts: 26

    Thanks for the info
    Mike - Thanks for your thoughtful response. I had not seen the UISS system, but it is good information to have. I agree - knowledge IS power. That's why we are here for each other!!

    USIS - Does it Apply?
    I had a 5cm tumor removed last June with an open partial nephrectomy. It was a papillary type cancer, Stage T1B, Fuhrman Grade III. Having read beforehand about the UCLA USIS grading system I specifically asked about it at my 1st follow-up. My UCSF Mount Zion surgeon said that it is not pertinent to my case. He just said that it was a fast growing, fast spreading cancer that he believes is totally removed. However, there could still be remaining undetected cells somewhere in my body and they will perform scans every 4-6 months to watch for any changes. Of course, I have 3 siblings that died of this same cancer in their early 50's (I am 67).

    I wish now that I had asked him why the USIS was not pertinent to my cancer, but I was kind of overwhelmed with all the information being discussed with the surgeon and three associates present ( UCSF is a teaching hospital). It may be because of my family history.
  • BG
    BG Member Posts: 85 Member
    MikeK703 said:

    Fuhrman Grade
    I've noticed that the folks who brought up Fuhrman Grading system remarked about not intending to scare or alarm anyone. They shouldn't worry about that. All of us need to be realistic and as knowledgeable as possible. I for one, welcome any information about kidney cancer and the battle I am facing in the near and long term. Knowledge is power, as they say.

    I've quoted below from the UCLA kidney cancer site. Here is the web page:
    http://kidneycancer.ucla.edu/body.cfm?id=37

    Note that in addition to staging and grading, excellent and poor health are also factors in the system.

    "There are two common staging systems for RCC, the TNM [tumor-node-metastasis] System and the New University of California Los Angeles Integrated Staging System (UISS). The Fuhrman Grading System is a system used to describe how kidney tumors appear under the microscope.

    "The New UCLA Integrated Staging System (UISS) is a more complex but probably more accurate system that incorporates the TNM staging systems, a person's overall health and the Fuhrman grade of the tumor.

    "In the UISS system: Patients without any tumor spread are divided into three groups: low risk, intermediate risk and high risk.

    "The Low Risk group is considered Stage I; are in excellent health other than the cancer and have a low Fuhrman grade tumor.
    The Intermediate Risk group is all others, without any spread.
    The High Risk group is either Stage III (but without lymph node spread), in poor health and have a high Fuhrman grade score; or Stage IV (without any spread, T4, N0, M0).
    The five-year cancer-specific survival (only deaths from cancer) for the low risk group is 91%, for the intermediate risk group is 80%, and for the high risk group is 55%."

    Mike

    Chromophobe no correlatio to fuhrman grade
    Hey everyone,

    From my research and according to my urologist, there does not appear to be a correlation in fuhrman grade and tumor agressivensess for chromophobe.

    As more and more research is being carried out, there are several markers that are being used to try to determine more accurte prognostics as well as targeted thereapy potentials. Some of this is early stage.

    What I am unsure of, if whether there is not a correlation between furhman grade for chromophobe or they just do not have enough data due to this rare subtype.

    BG
  • MikeK703
    MikeK703 Member Posts: 235

    USIS - Does it Apply?
    I had a 5cm tumor removed last June with an open partial nephrectomy. It was a papillary type cancer, Stage T1B, Fuhrman Grade III. Having read beforehand about the UCLA USIS grading system I specifically asked about it at my 1st follow-up. My UCSF Mount Zion surgeon said that it is not pertinent to my case. He just said that it was a fast growing, fast spreading cancer that he believes is totally removed. However, there could still be remaining undetected cells somewhere in my body and they will perform scans every 4-6 months to watch for any changes. Of course, I have 3 siblings that died of this same cancer in their early 50's (I am 67).

    I wish now that I had asked him why the USIS was not pertinent to my cancer, but I was kind of overwhelmed with all the information being discussed with the surgeon and three associates present ( UCSF is a teaching hospital). It may be because of my family history.

    UISS and Fuhrman
    Hi Michael,

    This stuff about Fuhrman grade and UISS and other staging systems is mostly all Greek to me (no offense to my Greek friends out there). When my urologist explained the pathology report, he seemed to skim over the Fuhrman system. When I asked about the Fuhrman Grade 2 on my next visit, he made an attempt to explain it but it went right over my head. He ended up telling me not to worry about it. Most of the stuff online regarding Fuhrman and UISS is not written for the layman. But based on what I have read, I'm guessing (note the word "guessing") that the reason the doctor told you that UISS does not apply in your case is because yours is papillary RCC and not clear cell RCC and he may be of the school that thinks the Fuhrman grade (which is used by the UISS) is not necessarily valid for papillary RCC. Again that's just a guess. If it is bothering you, you should definitely ask him about it. I'm in a big HMO and all of my doctors respond to emails. (I'm not crazy about some of my HMO's policies but I have to admit they do a pretty good job of getting back to me.)

    Here is a quote from a web page I found:

    "Although use of the Fuhrman grading system as a prognostic tool has been validated for clear cell renal carcinoma, its use for the other histologic subtypes (especially papillary and chromophobe) is a topic of debate."

    Here's the web page if you're interested:
    http://www.mdconsult.com/books/page.do?eid=4-u1.0-B978-1-4160-6193-9..10040-5--s0040&isbn=978-1-4160-6193-9&type=bookPage&from=content&uniqId=315914895-2

    And there's plenty more technical stuff on the web that is just as confusing as that page.

    Regards,
    Mike
  • Michael6701
    Michael6701 Member Posts: 26
    MikeK703 said:

    UISS and Fuhrman
    Hi Michael,

    This stuff about Fuhrman grade and UISS and other staging systems is mostly all Greek to me (no offense to my Greek friends out there). When my urologist explained the pathology report, he seemed to skim over the Fuhrman system. When I asked about the Fuhrman Grade 2 on my next visit, he made an attempt to explain it but it went right over my head. He ended up telling me not to worry about it. Most of the stuff online regarding Fuhrman and UISS is not written for the layman. But based on what I have read, I'm guessing (note the word "guessing") that the reason the doctor told you that UISS does not apply in your case is because yours is papillary RCC and not clear cell RCC and he may be of the school that thinks the Fuhrman grade (which is used by the UISS) is not necessarily valid for papillary RCC. Again that's just a guess. If it is bothering you, you should definitely ask him about it. I'm in a big HMO and all of my doctors respond to emails. (I'm not crazy about some of my HMO's policies but I have to admit they do a pretty good job of getting back to me.)

    Here is a quote from a web page I found:

    "Although use of the Fuhrman grading system as a prognostic tool has been validated for clear cell renal carcinoma, its use for the other histologic subtypes (especially papillary and chromophobe) is a topic of debate."

    Here's the web page if you're interested:
    http://www.mdconsult.com/books/page.do?eid=4-u1.0-B978-1-4160-6193-9..10040-5--s0040&isbn=978-1-4160-6193-9&type=bookPage&from=content&uniqId=315914895-2

    And there's plenty more technical stuff on the web that is just as confusing as that page.

    Regards,
    Mike

    Mike, thanks for your comments. My cancer surgeon is actually very accessible. In fact, I can contact him via e-mail and receive an answer quicker than I can get a call back from his support staff.

    I know that there is some debate re: papillary type cancers but my team of physicians at UCSF considered the Fuhrman Grade quite germane; it was the USIS that they dismissed for me (for reasons not clear to me). Part of the debate has to do with papillary Type 1 vs Type 2. As I understand it Type 1 is not quite as concerning as clear cell, whereas Type 2, which I have, is generally considered equally concerning as clear cell. I think part of the reason is that most Type 2 are Fuhrman Grade 3 or higher.

    I will ask my doctor about his comment next time I see him, but only out of academic curiosity. I am not that concerned because the 5-year survival rates, as discussed above, are either 65% or 80%, so the survival odds are still pretty good as far as I'm concerned. And those are averages so I imagine for those of us blessed with good health coverage and are diligent in our follow-ups those survival numbers are even better. The average life expectancy for men born in 1944 was only 63.6 and I am already 67; so, even though I'm not at all ready to go, that 5 year projection would be far less worrisome for someone like me than for some of others on this site.
  • keong72
    keong72 Member Posts: 11
    BG said:

    Chromophobe no correlatio to fuhrman grade
    Hey everyone,

    From my research and according to my urologist, there does not appear to be a correlation in fuhrman grade and tumor agressivensess for chromophobe.

    As more and more research is being carried out, there are several markers that are being used to try to determine more accurte prognostics as well as targeted thereapy potentials. Some of this is early stage.

    What I am unsure of, if whether there is not a correlation between furhman grade for chromophobe or they just do not have enough data due to this rare subtype.

    BG

    chromophobe
    Hi BG,I am new member and my tumour also is chromophobe grade 2 size 6x5,can u give me some info about chromophobe tumour, I so worry about this tumour and very hard find info ,thank u,,,,,


    Regards
    keong72
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    keong72 said:

    chromophobe
    Hi BG,I am new member and my tumour also is chromophobe grade 2 size 6x5,can u give me some info about chromophobe tumour, I so worry about this tumour and very hard find info ,thank u,,,,,


    Regards
    keong72

    Chromophobe
    Keong, the site below will give you some information about this rare form of cancer. Just above half way down the page there is a short note. Then, near the bottom there are references to papers with more information. I hope this helps. You are doing sensible things to help yourself and you will be in very good hands in Singapore. Good luck!

    http://csn.cancer.org/comment/reply/234406/1191104
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    Chromophobe
    Keong, the site below will give you some information about this rare form of cancer. Just above half way down the page there is a short note. Then, near the bottom there are references to papers with more information. I hope this helps. You are doing sensible things to help yourself and you will be in very good hands in Singapore. Good luck!

    http://csn.cancer.org/comment/reply/234406/1191104

    Fuhrman Grade IS VERY IMPORTANT - even for small tumors
    MNGirl is a valuable and well-informed contributor on this forum and I generally find myself in complete agreement with what she says. However, while appreciating that in starting this thread she had the best of intentions, I feel I must take issue with the statement in her subject line and the statistics she quotes. I think these are misleading and could be damaging to many readers. Let me explain why.

    A positive attitude is crucial for all of us here and MNGirl is a staunch supporter of that view and has done much to promote it. A major, probably THE major, obstacle to maintaining that attitude is undue attention to the "statistics" , many of which are, for our purposes as individual patients, virtually meaningless (for reasons some of which I shall detail below) and an oncologist who flourishes 'survival charts' is an oncologist who doesn't know what he/she is doing.

    For the vast majority of RCC patients, the principal prognostic factors are tumour size and, particularly, stage. Fuhrman grade is not of as much relevance. Even for the few that MNGirl has in mind, with small tumours and early stage but high grade, (and there are surely few stage 1 but grade 4 tumours?) it is questionable whether it often makes a practical difference to the actions of the patient or the treatment indicated. It does, however, give the patient yet another thing to worry about. This has just been illustrated by a newbie, Cool Breeze, who is a RN and yet still says "I'm freaked about the prognosis of grade 3." and "Now after reading all the posts on the furhman scale I have to say I'm frightened."

    It's fine to exercise sensible caution and not be complacent about one's prognosis but for many patients that can easily tip over into a paranoid preoccupation with the statistics and consequent counter-productive anxiety and over-attention to every little ache and pain that might be 'important'. These threads attest to the emotional lability and vulnerability most of us have felt.

    Mike made the sound comment that "Knowledge is power", a view I've also always taken. However, one must also remember the equally valid observation by Alexander Pope "A little learning is a dangerous thing; drink deep, or taste not the Pierian spring". The problem is that it's difficult to drink deep when there's not much there to drink - the knowledge landscape of RCC is still a fairly barren wasteland.

    Advances in the medical world, for a combination of both good and bad reasons, take a long while to filter though to general acceptance. Luckily for us progress in cancer research is going on at a good pace. Nonetheless, particularly with the less common cancers we have only just scratched the surface so far.

    The statistics and survival calculators based on them are essential for making scientific progress in epidemiology and R & D in developing new treatments. They are not of much value for us, as patients, though - for many reasons.

    The first is that any familiarity with probability theory will tell you that you can't extrapolate from population statistics to individual cases in any way that is genuinely helpful for us. [If I believed otherwise, contemplating Bosniak grade 4, Fuhrman grade 4, T4, unknown lymph node involvement, unknown met. status, residual chromophobe now predominantly sarcomatoid (and it gets worse from there) I might just as well not bother to get out of bed tomorrow morning. BUT, in fact, I'll start my day with 18 holes of golf on frozen ground and be busy all day, reading, writing and researching.]

    An analogy may help to illustrate the point. When the Belgian polymath Quetelet came up with the Quetelet Index in 1832 (now, due to Ancel Key, known to us as the Body Mass Index or BMI) it was of enormous value for population studies. However, It should never have been applied to individuals where, in various cases, it gives completely spurious results. Until there is widespread use of a better indicator though, it continues to be used with the imprimatur of the World Health Organisation as a measure of obesity for individuals (which it isn't).

    Another point is that in this complex field no-one has a monopoly of expertise. We patients need not only 'plumbers' and 'electricians' (urologists, radiologists, oncologists etc) but researchers who are knowledgable about experimental design and sophisticated in statistical theory. No-one can cover all the bases. The result can be calculators devised by people who lack depth of medical knowledge, numbers emanating from medical sources unversed in the necromancy of the statisticians, and so on.

    Even the best of survival calculator designers can't make a silk purse from a sow's ear. So much remains to be discovered. The TNM system has seen many refinements over recent years and more can be expected. With the rarer forms of RCC the data are too exiguous to permit of any reliable conclusions. 'The statistics' can't take proper account of an individual's condition (who can even guess what parameters are important - muscular strength, VO2 max. endurance, immune system robustness?). The putative improvement of prediction by the UISS classification is still, inevitably very crude. What are the relative weightings of different aspects of one's 'general health"? How does one know which co-morbidities may be of particular relevance? Very little is known for certain at the present time about the significance of different histological profiles, especially with the rarer forms. So much is still wide open.

    Finally, it must be recognised that the 'survival' stats (which are expressed in terms of medians, not 'averages') are all based on data which are hopelessly out-of-date, typically involving cases dating back to years before all the new modalities of detection and treatment. Even the stats in the superb website of the late Steve Dunn (a treasure trove of information and still probably the best starting point for anyone concerned with kidney cancer) all pre-date the major recent advances in adjuvant therapy and the numerous clinical trials now under way.

    Speaking personally, looking at "the statistics" I have less to be cheerful about than almost anyone else here but they don't weigh too heavily with me. I'm certainly not going to curl up in a corner and invite the inevitable. If RCC is due to get me it's going to have to go some if it's going to take me out before a wayward golf ball does the job!
  • MikeK703
    MikeK703 Member Posts: 235

    Fuhrman Grade IS VERY IMPORTANT - even for small tumors
    MNGirl is a valuable and well-informed contributor on this forum and I generally find myself in complete agreement with what she says. However, while appreciating that in starting this thread she had the best of intentions, I feel I must take issue with the statement in her subject line and the statistics she quotes. I think these are misleading and could be damaging to many readers. Let me explain why.

    A positive attitude is crucial for all of us here and MNGirl is a staunch supporter of that view and has done much to promote it. A major, probably THE major, obstacle to maintaining that attitude is undue attention to the "statistics" , many of which are, for our purposes as individual patients, virtually meaningless (for reasons some of which I shall detail below) and an oncologist who flourishes 'survival charts' is an oncologist who doesn't know what he/she is doing.

    For the vast majority of RCC patients, the principal prognostic factors are tumour size and, particularly, stage. Fuhrman grade is not of as much relevance. Even for the few that MNGirl has in mind, with small tumours and early stage but high grade, (and there are surely few stage 1 but grade 4 tumours?) it is questionable whether it often makes a practical difference to the actions of the patient or the treatment indicated. It does, however, give the patient yet another thing to worry about. This has just been illustrated by a newbie, Cool Breeze, who is a RN and yet still says "I'm freaked about the prognosis of grade 3." and "Now after reading all the posts on the furhman scale I have to say I'm frightened."

    It's fine to exercise sensible caution and not be complacent about one's prognosis but for many patients that can easily tip over into a paranoid preoccupation with the statistics and consequent counter-productive anxiety and over-attention to every little ache and pain that might be 'important'. These threads attest to the emotional lability and vulnerability most of us have felt.

    Mike made the sound comment that "Knowledge is power", a view I've also always taken. However, one must also remember the equally valid observation by Alexander Pope "A little learning is a dangerous thing; drink deep, or taste not the Pierian spring". The problem is that it's difficult to drink deep when there's not much there to drink - the knowledge landscape of RCC is still a fairly barren wasteland.

    Advances in the medical world, for a combination of both good and bad reasons, take a long while to filter though to general acceptance. Luckily for us progress in cancer research is going on at a good pace. Nonetheless, particularly with the less common cancers we have only just scratched the surface so far.

    The statistics and survival calculators based on them are essential for making scientific progress in epidemiology and R & D in developing new treatments. They are not of much value for us, as patients, though - for many reasons.

    The first is that any familiarity with probability theory will tell you that you can't extrapolate from population statistics to individual cases in any way that is genuinely helpful for us. [If I believed otherwise, contemplating Bosniak grade 4, Fuhrman grade 4, T4, unknown lymph node involvement, unknown met. status, residual chromophobe now predominantly sarcomatoid (and it gets worse from there) I might just as well not bother to get out of bed tomorrow morning. BUT, in fact, I'll start my day with 18 holes of golf on frozen ground and be busy all day, reading, writing and researching.]

    An analogy may help to illustrate the point. When the Belgian polymath Quetelet came up with the Quetelet Index in 1832 (now, due to Ancel Key, known to us as the Body Mass Index or BMI) it was of enormous value for population studies. However, It should never have been applied to individuals where, in various cases, it gives completely spurious results. Until there is widespread use of a better indicator though, it continues to be used with the imprimatur of the World Health Organisation as a measure of obesity for individuals (which it isn't).

    Another point is that in this complex field no-one has a monopoly of expertise. We patients need not only 'plumbers' and 'electricians' (urologists, radiologists, oncologists etc) but researchers who are knowledgable about experimental design and sophisticated in statistical theory. No-one can cover all the bases. The result can be calculators devised by people who lack depth of medical knowledge, numbers emanating from medical sources unversed in the necromancy of the statisticians, and so on.

    Even the best of survival calculator designers can't make a silk purse from a sow's ear. So much remains to be discovered. The TNM system has seen many refinements over recent years and more can be expected. With the rarer forms of RCC the data are too exiguous to permit of any reliable conclusions. 'The statistics' can't take proper account of an individual's condition (who can even guess what parameters are important - muscular strength, VO2 max. endurance, immune system robustness?). The putative improvement of prediction by the UISS classification is still, inevitably very crude. What are the relative weightings of different aspects of one's 'general health"? How does one know which co-morbidities may be of particular relevance? Very little is known for certain at the present time about the significance of different histological profiles, especially with the rarer forms. So much is still wide open.

    Finally, it must be recognised that the 'survival' stats (which are expressed in terms of medians, not 'averages') are all based on data which are hopelessly out-of-date, typically involving cases dating back to years before all the new modalities of detection and treatment. Even the stats in the superb website of the late Steve Dunn (a treasure trove of information and still probably the best starting point for anyone concerned with kidney cancer) all pre-date the major recent advances in adjuvant therapy and the numerous clinical trials now under way.

    Speaking personally, looking at "the statistics" I have less to be cheerful about than almost anyone else here but they don't weigh too heavily with me. I'm certainly not going to curl up in a corner and invite the inevitable. If RCC is due to get me it's going to have to go some if it's going to take me out before a wayward golf ball does the job!

    Sensitive topics
    Tex,
    I understand what you are saying. But there are people in this world who can't even utter the word "cancer," never mind contemplate projected survival rates. There will always be those of us who are interested in stuff like this and those of us who aren't. Me? I would rather know the worst and hope for the best. There's a lot of positive reinforcement here, and that's one of the purposes of this site and it's something we all need at times. But if we start censoring ourselves, even for a good reason like trying to keep everybody positive (an impossibility), it defeats another of this site's purposes -- to have a place to go to where we can learn something about kidney cancer. In the end, we are responsible for our own mental outlook and our reaction to what we read. Most of us are not in the medical field and everything said here should fall under that caveat and be taken with the proverbial grain of salt.
    Regards,
    Mike
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    MikeK703 said:

    Sensitive topics
    Tex,
    I understand what you are saying. But there are people in this world who can't even utter the word "cancer," never mind contemplate projected survival rates. There will always be those of us who are interested in stuff like this and those of us who aren't. Me? I would rather know the worst and hope for the best. There's a lot of positive reinforcement here, and that's one of the purposes of this site and it's something we all need at times. But if we start censoring ourselves, even for a good reason like trying to keep everybody positive (an impossibility), it defeats another of this site's purposes -- to have a place to go to where we can learn something about kidney cancer. In the end, we are responsible for our own mental outlook and our reaction to what we read. Most of us are not in the medical field and everything said here should fall under that caveat and be taken with the proverbial grain of salt.
    Regards,
    Mike

    Topics
    Mike, I'm pretty sure that you and I have essentially the same views on all of this. We are among those who are keen to learn as much as we can. Most of us, however, come here for reassurance that what we are going through is not unique, to get some helpful advice on handling the practical problems and to enjoy the warm and fuzzy feelings engendered by knowing other folks are wishing us well and praying for us, and these are all equally legitimate reasons. You and I are among the minority who post links to real information on relevant topics - the very opposite of censorship. (I feel increasingly that this is a waste of time since most members aren't much concerned with learning more, just with feeling better and that's fair enough.)

    The main point of my message was just to say that many here are damaged as a result of misunderstanding "the statistics" when they shouldn't be. The staging and grading systems are very important. It's clearly much better to be 30 with a tiny tumour that's stage 1 grade 2, than to be 70 with a large tumour that's stage 4 and grade 4.

    The "survival statistics" are a different matter and do a lot of people a lot of harm. There's no censorship involved in adding further information by explaining why no-one should make the mistake (for all the reasons I gave) of thinking they can draw any valid conclusions about their personal prognosis from those statistics.

    Best wishes,

    TW
  • Minnesota Girl
    Minnesota Girl Member Posts: 119

    Topics
    Mike, I'm pretty sure that you and I have essentially the same views on all of this. We are among those who are keen to learn as much as we can. Most of us, however, come here for reassurance that what we are going through is not unique, to get some helpful advice on handling the practical problems and to enjoy the warm and fuzzy feelings engendered by knowing other folks are wishing us well and praying for us, and these are all equally legitimate reasons. You and I are among the minority who post links to real information on relevant topics - the very opposite of censorship. (I feel increasingly that this is a waste of time since most members aren't much concerned with learning more, just with feeling better and that's fair enough.)

    The main point of my message was just to say that many here are damaged as a result of misunderstanding "the statistics" when they shouldn't be. The staging and grading systems are very important. It's clearly much better to be 30 with a tiny tumour that's stage 1 grade 2, than to be 70 with a large tumour that's stage 4 and grade 4.

    The "survival statistics" are a different matter and do a lot of people a lot of harm. There's no censorship involved in adding further information by explaining why no-one should make the mistake (for all the reasons I gave) of thinking they can draw any valid conclusions about their personal prognosis from those statistics.

    Best wishes,

    TW

    With all due respect
    I have to say, the key message I wanted to emphasize was "to encourage those of us that had small, high-grade tumors to be especially vigilant in our follow-up care." The response I get from "the minority who post links to real information on relevant topics" is that my oncologist is a bad doctor - because he gave me information that I asked for??

    Dozens of times on this site, others have stated "the survival rate for small tumors is 99%." That is NOT universally true and I've never seen it challenged. I would not want someone to become complacent because THAT statistic is misunderstood.
  • Michael6701
    Michael6701 Member Posts: 26

    With all due respect
    I have to say, the key message I wanted to emphasize was "to encourage those of us that had small, high-grade tumors to be especially vigilant in our follow-up care." The response I get from "the minority who post links to real information on relevant topics" is that my oncologist is a bad doctor - because he gave me information that I asked for??

    Dozens of times on this site, others have stated "the survival rate for small tumors is 99%." That is NOT universally true and I've never seen it challenged. I would not want someone to become complacent because THAT statistic is misunderstood.

    With All Due Respect
    Minnesota Girl,

    What you had to say originally on this topic was an excellent contribution for all the reasons you just stated. I began to participate in this site for information and real shared experiences, not for empty platitudes that would make me feel all "warm and fuzzy".


    Michael
  • Texas_wedge
    Texas_wedge Member Posts: 2,798

    With all due respect
    I have to say, the key message I wanted to emphasize was "to encourage those of us that had small, high-grade tumors to be especially vigilant in our follow-up care." The response I get from "the minority who post links to real information on relevant topics" is that my oncologist is a bad doctor - because he gave me information that I asked for??

    Dozens of times on this site, others have stated "the survival rate for small tumors is 99%." That is NOT universally true and I've never seen it challenged. I would not want someone to become complacent because THAT statistic is misunderstood.

    With all due respect
    I do hope we can be permitted to have productive differences of opinion here. As I mentioned, I usually find myself in full agreement with your postings and I acknowledged and applauded your motives in creating this thread. I also endorsed the view that being complacent is unwise, which is why I said previously that personally 'I try to maintain my sense of Tumour'.

    That said, you don't seem to have challenged the correctness of anything I have put forward and I adhere to the views I expressed. Doubtless your oncologist had the worthiest of motives in quoting very favourable odds to you at first meeting. When you invited him to revisit the topic, I trust he gave you what you asked for ALONG WITH a caveat not to make too much of the supposed "survival rates".

    As I tried to explain, those stats have great value in epidemiology, r & d and in evaluating treatment options. HOWEVER, they are of negligible value in appraising odds for an individual patient for at least 3 reasons, viz. the inadmissibility of extrapolation from population stats to individual cases, the lack of appropriate granularity of the classificatory criteria and the fact that the data employed are hopelessly out-of-date and pre-date all of the recent advances in both detection and therapy.

    If your deference to the "survival" stats is vindicated then at T4, stage4, grade 4 (Bosniak and Fuhrman), sarcomatoid etc, I won't be around much longer to trouble you with my postings. You may dismiss my disregard for those stats as wishful thinking to which I would reply that I always try to found my judgments on solid scientific grounds. Many medics (I would venture to say, from personal experience, most) do not have a very sophisticated understanding of statistics and do a lot of damage by quoting "survival rate" data that are virtually worthless to their patients.