Fuhrman Grade IS VERY IMPORTANT - even for small tumors
Comments
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Monograms / Nomograms / Grade / Stage - RevisitingTexas_wedge said: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the lack of appropriate granularity of the classificatory criteria and the fact that the data employed are hopelessly out-of-date and pre-date all of the recent advances in both detection and therapy.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.
Tex / MNGirl / Others - I found the conversation interesting, exhausting, and confusing between all that has been written. We all have different personalities, and we come here for different reasons, some to learn, some to share, some to find comfort, and some to give comfort. I.e. there is no absolute truth, which takes me to a buddhist tenet, there is no objective reality, and reality is formed between the object and the subject, truth only exists in perception ?
Tex - you wrote in your subject line "Fuhrman Grade IS VERY IMPORTANT - even for small tumors" and then you went on to write, as follows - "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."
I exchanged emails with a surgeon in Wisconsin, who writes to me, "Nomograms and each of their components are "blunt tools" which perform well on populations but are not very helpful in individuals with more rare situations because they don't have enough numbers to predict those situations."
More personally - I quote "Most tumors which invade the renal vein are large and these patients are at higher risk for progression. If you click on the methodology or source portion of the first nomogram you will find a link to a paper with ~700 patients. Very few of them likely had your situation. In the largest paper of this type reporting outcomes, only 26/1215 (2.4%) of patients had renal vein invasion with a tumor less than 4cm. Furthermore, you are young and healthy, which is also uncommon in this population (mean age in 60s). Nomograms are not good at predicting rare situations, like yours. "
The people who have given me numbers seem very attached to their own ideas, studies, and what they put in their papers, so much so they do not wish to re-visit or question themselves, which does not serve the individual person who benefits from their studies.0 -
Prognosis for small high-grade tumourslivealive said:Monograms / Nomograms / Grade / Stage - Revisiting
Tex / MNGirl / Others - I found the conversation interesting, exhausting, and confusing between all that has been written. We all have different personalities, and we come here for different reasons, some to learn, some to share, some to find comfort, and some to give comfort. I.e. there is no absolute truth, which takes me to a buddhist tenet, there is no objective reality, and reality is formed between the object and the subject, truth only exists in perception ?
Tex - you wrote in your subject line "Fuhrman Grade IS VERY IMPORTANT - even for small tumors" and then you went on to write, as follows - "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."
I exchanged emails with a surgeon in Wisconsin, who writes to me, "Nomograms and each of their components are "blunt tools" which perform well on populations but are not very helpful in individuals with more rare situations because they don't have enough numbers to predict those situations."
More personally - I quote "Most tumors which invade the renal vein are large and these patients are at higher risk for progression. If you click on the methodology or source portion of the first nomogram you will find a link to a paper with ~700 patients. Very few of them likely had your situation. In the largest paper of this type reporting outcomes, only 26/1215 (2.4%) of patients had renal vein invasion with a tumor less than 4cm. Furthermore, you are young and healthy, which is also uncommon in this population (mean age in 60s). Nomograms are not good at predicting rare situations, like yours. "
The people who have given me numbers seem very attached to their own ideas, studies, and what they put in their papers, so much so they do not wish to re-visit or question themselves, which does not serve the individual person who benefits from their studies.
There is a good deal of information above, relating to some important topics and a few key points to recognise - not to be complacent with this very sneaky disease; not to make too much of the statistics; to appreciate that size and stage of tumours are much more important for prognosis than grade. On this last issue, the following statement from the UCLA Cancer Program summarises:
"Stages of Kidney Cancer
Although grading and the identification of cancer cell types help determine a patient's prognosis, most doctors believe that the most important factor in predicting prognosis, as well as the treatment options, is the "stage" of the cancer.
Staging is the process of gathering information from physical examinations and diagnostic tests to determine the size and location of the tumor and how widespread a cancer is."
Nonetheless, it is true that some (but fortunately very few) small tumours can have a very aggressive character such that they grow and metastasise rapidly. I've developed a particular interest in the subject just lately! In December I had a radical nephrectomy for a 9 cm. tumour, a few weeks after a clear CT scan had suggested it was 8 cm. My first follow-up CT on 29th February revealed a new tumour, not in evidence in late October, that had developed from being undetectable to 1 cm. in 4 months. By the time I had a second op a month ago, that new tumour had grown 16 times as large in the space of only 30 days!! Now, I'd call that fast - about 20 times as fast as the average!
There is little doubt that this is very unusual. In most cases small tumours are not a serious cause for worry, which is why it is now generally accepted that the best course for tumours smaller than 3 cm. is NO treatment but active surveillance (unless and until signs of change indicate the need to take action) and premature surgery is justifiably regarded as both unnecessary and irresponsible. So, I've been revisiting the topic and I've discovered a relevant paper from Korea which seems important and which I discuss below.
In this context I looked again at the information MNGirl was given by her oncologist. He showed her a chart apparently suggesting that the 5-year survival rate for patients with small, stage 1 tumours with grade 3 or 4 is only 65%. This, as MNGirl noted on 10th February, is in marked conflict with the information that iceman gives to newbies here to reassure them if they have small tumours - "Dozens of times on this site, others have stated the survival rate for small tumors is 99%."
I've not seen other posters challenging when iceman and others quote such figures and iceman isn't one to come up with duff information. Also, the figures MNGirl was given by her oncologist had struck me as alarmingly implausible. Having now explored again, I find that the survival rate he should have suggested for her was in the region of 95 -100% and a figure of 65% was simply ridiculous and completely out of kilter with all of the nomograms and calculators that one can consult online.
If you look at the Renal Cell Carcinoma Outcome Calculator produced by the Laboratory for Quantitative Medicine at Massachusetts General Hospital, you'll find that it takes account of all of the generally accepted criteria for prognosis.
Accordingly, the survival projection - of dying from cancer - for a 43 year old white female with a 2.5 cm. tumour, confined to the renal cortex, with no positive lymph nodes, clear cell histology and Fuhrman grade 3 is 94% AT 15 YEARS!!!!! The prediction at 5 years is 98%!!! After 5, and even after 15, years it's twice as likely that that lady would die of something other than cancer than that she'd die of cancer.
Still more interesting, is to vary the parameters. For the same lady, even at the worst Fuhrman grade of 4, the 5 year survival is 97%. Making it even worse still, by assuming sarcomatoid de-differentiation, the survival rate is still as high as 92%.
The factors that really impact her survival are TUMOUR SIZE AND SPREAD. The likelihood of dying from cancer, at 15 years, with clear cell, grade 3 and tumour size 2.5 cm. is 94%, with a 5 cm. tumour it falls to 88%, 10cm. tumour 77% and 15 cm. 67%. More dramatic still is the effect of spread - with more than 2 positive lymph nodes and tumour extension beyond the renal fascia the 15 year survival rate even for a tiny 2.5 cm. tumour is given as 3% !! [However, I doubt whether anyone ever has a 2.5 cm. tumour together with more than 2 positive lymph nodes and extension beyond the renal fascia.]
Although, for the reasons I've given earlier in this thread, you can't sensibly apply these predictive figures to individual cases, I hope this information offers some comfort to MNGirl and others who had, or have, small tumours with no mets, whatever their Fuhrman grade.
The 2010 Korean paper entitled "The Prognostic Factors for Patients with pT1a Renal Cell Carcinoma" throws a whole new light on small tumours. The bottom line is that size, stage and grade are not important for prognosis - what really matter are microvascular invasion and necrosis and these are the criteria which should guide subsequent monitoring and treatment plans.0 -
Prognosis for small high grade tumorsTexas_wedge said:Prognosis for small high-grade tumours
There is a good deal of information above, relating to some important topics and a few key points to recognise - not to be complacent with this very sneaky disease; not to make too much of the statistics; to appreciate that size and stage of tumours are much more important for prognosis than grade. On this last issue, the following statement from the UCLA Cancer Program summarises:
"Stages of Kidney Cancer
Although grading and the identification of cancer cell types help determine a patient's prognosis, most doctors believe that the most important factor in predicting prognosis, as well as the treatment options, is the "stage" of the cancer.
Staging is the process of gathering information from physical examinations and diagnostic tests to determine the size and location of the tumor and how widespread a cancer is."
Nonetheless, it is true that some (but fortunately very few) small tumours can have a very aggressive character such that they grow and metastasise rapidly. I've developed a particular interest in the subject just lately! In December I had a radical nephrectomy for a 9 cm. tumour, a few weeks after a clear CT scan had suggested it was 8 cm. My first follow-up CT on 29th February revealed a new tumour, not in evidence in late October, that had developed from being undetectable to 1 cm. in 4 months. By the time I had a second op a month ago, that new tumour had grown 16 times as large in the space of only 30 days!! Now, I'd call that fast - about 20 times as fast as the average!
There is little doubt that this is very unusual. In most cases small tumours are not a serious cause for worry, which is why it is now generally accepted that the best course for tumours smaller than 3 cm. is NO treatment but active surveillance (unless and until signs of change indicate the need to take action) and premature surgery is justifiably regarded as both unnecessary and irresponsible. So, I've been revisiting the topic and I've discovered a relevant paper from Korea which seems important and which I discuss below.
In this context I looked again at the information MNGirl was given by her oncologist. He showed her a chart apparently suggesting that the 5-year survival rate for patients with small, stage 1 tumours with grade 3 or 4 is only 65%. This, as MNGirl noted on 10th February, is in marked conflict with the information that iceman gives to newbies here to reassure them if they have small tumours - "Dozens of times on this site, others have stated the survival rate for small tumors is 99%."
I've not seen other posters challenging when iceman and others quote such figures and iceman isn't one to come up with duff information. Also, the figures MNGirl was given by her oncologist had struck me as alarmingly implausible. Having now explored again, I find that the survival rate he should have suggested for her was in the region of 95 -100% and a figure of 65% was simply ridiculous and completely out of kilter with all of the nomograms and calculators that one can consult online.
If you look at the Renal Cell Carcinoma Outcome Calculator produced by the Laboratory for Quantitative Medicine at Massachusetts General Hospital, you'll find that it takes account of all of the generally accepted criteria for prognosis.
Accordingly, the survival projection - of dying from cancer - for a 43 year old white female with a 2.5 cm. tumour, confined to the renal cortex, with no positive lymph nodes, clear cell histology and Fuhrman grade 3 is 94% AT 15 YEARS!!!!! The prediction at 5 years is 98%!!! After 5, and even after 15, years it's twice as likely that that lady would die of something other than cancer than that she'd die of cancer.
Still more interesting, is to vary the parameters. For the same lady, even at the worst Fuhrman grade of 4, the 5 year survival is 97%. Making it even worse still, by assuming sarcomatoid de-differentiation, the survival rate is still as high as 92%.
The factors that really impact her survival are TUMOUR SIZE AND SPREAD. The likelihood of dying from cancer, at 15 years, with clear cell, grade 3 and tumour size 2.5 cm. is 94%, with a 5 cm. tumour it falls to 88%, 10cm. tumour 77% and 15 cm. 67%. More dramatic still is the effect of spread - with more than 2 positive lymph nodes and tumour extension beyond the renal fascia the 15 year survival rate even for a tiny 2.5 cm. tumour is given as 3% !! [However, I doubt whether anyone ever has a 2.5 cm. tumour together with more than 2 positive lymph nodes and extension beyond the renal fascia.]
Although, for the reasons I've given earlier in this thread, you can't sensibly apply these predictive figures to individual cases, I hope this information offers some comfort to MNGirl and others who had, or have, small tumours with no mets, whatever their Fuhrman grade.
The 2010 Korean paper entitled "The Prognostic Factors for Patients with pT1a Renal Cell Carcinoma" throws a whole new light on small tumours. The bottom line is that size, stage and grade are not important for prognosis - what really matter are microvascular invasion and necrosis and these are the criteria which should guide subsequent monitoring and treatment plans.
One anecdotal case in process (mine, 62 year old male) of a small high grade tumor: I had a successful partial nephrectomy on Aug 16, 2011. Tiny, 1.8 cm tumor (stage 1), but agressive, grade 4 with 50% sarcomatoid features. Doc placed me on three month checks due to the grade. He just called (after my third CT scan and x-rays yesterday) to report still no evidence of disease and suggest we could go to 6 months checks now. I am a long way from five years but looking forward to positively impacting the five-year (not to mention fifteen-year!), small, but high grade survival statistic!0 -
djc1djc2 said:Prognosis for small high grade tumors
One anecdotal case in process (mine, 62 year old male) of a small high grade tumor: I had a successful partial nephrectomy on Aug 16, 2011. Tiny, 1.8 cm tumor (stage 1), but agressive, grade 4 with 50% sarcomatoid features. Doc placed me on three month checks due to the grade. He just called (after my third CT scan and x-rays yesterday) to report still no evidence of disease and suggest we could go to 6 months checks now. I am a long way from five years but looking forward to positively impacting the five-year (not to mention fifteen-year!), small, but high grade survival statistic!
That is such good news. I am so happy for you. I go for my first scan in August. had stage 2 but only grade 1. Full kidney removal. My oncologist called for ct scans every 6 months but my urologist wants one every 3 months. I dont mind the extra watch :-) Good luck to you for many MANY more years and clean scans!! I wonder what the Renal Cell Carcinoma Outcome Calculator would say for me? Tex?0 -
NED cubed and counting...djc2 said:Prognosis for small high grade tumors
One anecdotal case in process (mine, 62 year old male) of a small high grade tumor: I had a successful partial nephrectomy on Aug 16, 2011. Tiny, 1.8 cm tumor (stage 1), but agressive, grade 4 with 50% sarcomatoid features. Doc placed me on three month checks due to the grade. He just called (after my third CT scan and x-rays yesterday) to report still no evidence of disease and suggest we could go to 6 months checks now. I am a long way from five years but looking forward to positively impacting the five-year (not to mention fifteen-year!), small, but high grade survival statistic!
djc,
Congrats on the continued good reports, you are so fortunate that you found it early. Here's hoping that 15 years is just the beginning!0 -
Calculatorssunlover_56 said:djc1
That is such good news. I am so happy for you. I go for my first scan in August. had stage 2 but only grade 1. Full kidney removal. My oncologist called for ct scans every 6 months but my urologist wants one every 3 months. I dont mind the extra watch :-) Good luck to you for many MANY more years and clean scans!! I wonder what the Renal Cell Carcinoma Outcome Calculator would say for me? Tex?
Judy, as I've said repeatedly, you can't meaningfully extrapolate from population stats to individual cases so in that respect the "calculators" are just so much crap.
However, for what it's worth, I punched in your personal parameters and it confirmed what we already knew - that your longevity is almost unaltered from what it would have been without the tumour that you formerly HAD. So all you need to do is look after yourself and those two lovely dogs of yours sensibly and all will be well. Your scan in August will doubtless cheer you up. [I'm due for my next follow-up scan (first since my virtually instantaneous recurrence) next week and I'm prepared for finding that the results won't cheer me up any but that's because my stage, grade, histology and necrosis status are not remotely as favourable as yours.]0 -
Foxfoxhd 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.
I just love your positive attitude!!! You are an inspiration. Please dont ever change :-)0 -
CaculatorsTexas_wedge said:Calculators
Judy, as I've said repeatedly, you can't meaningfully extrapolate from population stats to individual cases so in that respect the "calculators" are just so much crap.
However, for what it's worth, I punched in your personal parameters and it confirmed what we already knew - that your longevity is almost unaltered from what it would have been without the tumour that you formerly HAD. So all you need to do is look after yourself and those two lovely dogs of yours sensibly and all will be well. Your scan in August will doubtless cheer you up. [I'm due for my next follow-up scan (first since my virtually instantaneous recurrence) next week and I'm prepared for finding that the results won't cheer me up any but that's because my stage, grade, histology and necrosis status are not remotely as favourable as yours.]
I know I am blessed, Tex, And I know I should stop looking for reassurance. I am getting there. Its just taking me a while to go from "you have cancer" to "You are cured" It gets better for me every day. I am even getting back my enthusiasm for all the things I used to love to do. Getting my flowers planted, my pool put back up (took it down after the flood)and hopefully spending some time at the lake. I love it there. I really admire and respect you for the wonderful way you handle not only your own "C" dx but the way you try to help all the rest of us. You have made a definate impression on my life and I am hoping soon that I can help some of the newbies on here. Thank Tex :-)0 -
In my humble opinion,Texas_wedge said: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!
statistics and research about RCC are still in the infant stage. Stats still say it is predominant in men over 55 - with defining factors of smoking and high blood pressure. We're now seeing more and more women and young men and women being diagnosed with this disease who do not have any of the 'expected' risk factors.
I was diagnosed in 2001 - following radical nephrectomy (with adrenal gland) pathology was
Stage 1, Grade 2, N0, M0 - 6.5 cm. in greatest diameter, no renal vein involvement. I was considered 'cured'.
Bottom line is - and again, in my opinion - followup is critical - regardless of tumor size or staging. Had my oncologist not been so diligent, my first recurrance could have been my last (it occurred 4.5 years after the original).
It seems to me that regardless of the current research or statistics, there seem to be no guarantees - no 'take it to the bank' statements about RCC.
LizB0 -
IMHO...we should all heed your advice...lbinmsp said:In my humble opinion,
statistics and research about RCC are still in the infant stage. Stats still say it is predominant in men over 55 - with defining factors of smoking and high blood pressure. We're now seeing more and more women and young men and women being diagnosed with this disease who do not have any of the 'expected' risk factors.
I was diagnosed in 2001 - following radical nephrectomy (with adrenal gland) pathology was
Stage 1, Grade 2, N0, M0 - 6.5 cm. in greatest diameter, no renal vein involvement. I was considered 'cured'.
Bottom line is - and again, in my opinion - followup is critical - regardless of tumor size or staging. Had my oncologist not been so diligent, my first recurrance could have been my last (it occurred 4.5 years after the original).
It seems to me that regardless of the current research or statistics, there seem to be no guarantees - no 'take it to the bank' statements about RCC.
LizB
Hi lb,
It is your humble opinion that I for one find the most value in. The voice of experience that you bring to the table helps ward off complacency and reminds me to stay ever vigilant as time passes. When the doc told me at the 2 year mark that he really didn't need to see me again, I thought of you and told him I would rather keep testing for at least 5 years, he agreed.
How goes the current battle? Are you still tolerating the Sutent well? Any updates on its effectiveness?
Thanks for being here,
Gary0 -
Prognosis for small high grade tumorsgarym said:IMHO...we should all heed your advice...
Hi lb,
It is your humble opinion that I for one find the most value in. The voice of experience that you bring to the table helps ward off complacency and reminds me to stay ever vigilant as time passes. When the doc told me at the 2 year mark that he really didn't need to see me again, I thought of you and told him I would rather keep testing for at least 5 years, he agreed.
How goes the current battle? Are you still tolerating the Sutent well? Any updates on its effectiveness?
Thanks for being here,
Gary
djc2, as I recall your underlying histology was clear cell which is faster developing than chromophobe and goes some way to explaining how you got to 50% sarcomatoid at only 1.8 cm. tumour. I got to "predominantly" sarcomatoid at 9 cm. from originally chromophobe. However, i'm still amazed that you got to 50% at less than 2 cm. Has anyone ever explained how come you got such an aggressive histology while the tumour was still so small (a good case of 'the exception that proves the rule') ?
It's wonderful to hear how well you're doing and that we can expect to see you shift the stats in the right direction!
Perhaps your case illustrates how relatively unimportant Fuhrman grade is - you continue to show NED after being grade 4 but only stage 1, which (the stage) is what really mattered and augurs well for your long, healthy future.0 -
Helping otherssunlover_56 said:Caculators
I know I am blessed, Tex, And I know I should stop looking for reassurance. I am getting there. Its just taking me a while to go from "you have cancer" to "You are cured" It gets better for me every day. I am even getting back my enthusiasm for all the things I used to love to do. Getting my flowers planted, my pool put back up (took it down after the flood)and hopefully spending some time at the lake. I love it there. I really admire and respect you for the wonderful way you handle not only your own "C" dx but the way you try to help all the rest of us. You have made a definate impression on my life and I am hoping soon that I can help some of the newbies on here. Thank Tex :-)
Great to hear how well you're getting it all back together Judy. I feel sure our mainstays here, Garry (iceman) and Gary will welcome your assistance in helping newcomers when you're well settled into your new 'normal' life.
We look out at a "lake" with an island in it, on the other side of the fairway which our garden borders, but it's really just a large pond. Is the lake you love a big one? Boating? Lakeside barbecues?0 -
Helping otherssunlover_56 said:Caculators
I know I am blessed, Tex, And I know I should stop looking for reassurance. I am getting there. Its just taking me a while to go from "you have cancer" to "You are cured" It gets better for me every day. I am even getting back my enthusiasm for all the things I used to love to do. Getting my flowers planted, my pool put back up (took it down after the flood)and hopefully spending some time at the lake. I love it there. I really admire and respect you for the wonderful way you handle not only your own "C" dx but the way you try to help all the rest of us. You have made a definate impression on my life and I am hoping soon that I can help some of the newbies on here. Thank Tex :-)
[Duplicated - with about 40 on board too much contention?]0 -
Fuhrman gradeTexas_wedge said:Prognosis for small high grade tumors
djc2, as I recall your underlying histology was clear cell which is faster developing than chromophobe and goes some way to explaining how you got to 50% sarcomatoid at only 1.8 cm. tumour. I got to "predominantly" sarcomatoid at 9 cm. from originally chromophobe. However, i'm still amazed that you got to 50% at less than 2 cm. Has anyone ever explained how come you got such an aggressive histology while the tumour was still so small (a good case of 'the exception that proves the rule') ?
It's wonderful to hear how well you're doing and that we can expect to see you shift the stats in the right direction!
Perhaps your case illustrates how relatively unimportant Fuhrman grade is - you continue to show NED after being grade 4 but only stage 1, which (the stage) is what really mattered and augurs well for your long, healthy future.
First ned is always the best - congratulations djc2.
I guess I inadvertently missed your earlier postings of stage 1/grade 4 dx and find myself staring at the screen. Isn't this extremely rare? Has your doctor ever given any background that could possibly explain such a small tumor but such a high grade?
Also, here's another question that probably everyone here knows the answer except me. Does a grade 4 ALWAYS have sarcomatoid features or is there grade 4 without sarcomatoid features?0 -
VigilanceTexas_wedge said:Prognosis for small high grade tumors
djc2, as I recall your underlying histology was clear cell which is faster developing than chromophobe and goes some way to explaining how you got to 50% sarcomatoid at only 1.8 cm. tumour. I got to "predominantly" sarcomatoid at 9 cm. from originally chromophobe. However, i'm still amazed that you got to 50% at less than 2 cm. Has anyone ever explained how come you got such an aggressive histology while the tumour was still so small (a good case of 'the exception that proves the rule') ?
It's wonderful to hear how well you're doing and that we can expect to see you shift the stats in the right direction!
Perhaps your case illustrates how relatively unimportant Fuhrman grade is - you continue to show NED after being grade 4 but only stage 1, which (the stage) is what really mattered and augurs well for your long, healthy future.
Liz, I endorse what you say about no bankable statements being possible with 'the sneaky disease'.
Your experience, along with those of many others, makes me wonder whether you truly had a 'recurrence' or whether it was actually a new primary, arising from circulating tumour cells that didn't derive from the original tumour. Perhaps some of us have systems where the radar is down at a critical time, allowing a tumour to develop and this can happen again, years later, without any connection with the first tumour.
After all, with your first occurrence it happened spontaneously - no-one suggested it must have come from an undetected previous tumour (if they did, we'd be into an 'infinite' regress) so, logically, why assume that the second occurrence is directly related to the first? I would welcome any comments board members care to make on this bit of speculation!
I take the opportunity to join Gary in enquiring how you're getting on and to sincerely hope the answer is a cheering one.0 -
Grade 4alice124 said:Fuhrman grade
First ned is always the best - congratulations djc2.
I guess I inadvertently missed your earlier postings of stage 1/grade 4 dx and find myself staring at the screen. Isn't this extremely rare? Has your doctor ever given any background that could possibly explain such a small tumor but such a high grade?
Also, here's another question that probably everyone here knows the answer except me. Does a grade 4 ALWAYS have sarcomatoid features or is there grade 4 without sarcomatoid features?
Alice,
I don't know for sure if a grade 4 always has sarcomatoid features but I'm stage T1b (5 cm) with Fuhrman grade 4. I have 5% sarcomatoid features. Like Minnesota Girl said in her first post here, I'm now in a mental place where I can ask a lot more questions than I could at my first visit, so that will be one of my questions in my first (6 month) scan visit in June.
The pathologist's comments for my 5cm tumor with 5% sarcomatoid:
"The tumor is predominantly clear cell with a Fuhrman nuclear grade 3/4. However there is a focal area with tumor cells exhibiting rhabdoid features in a myxochondroid background, thus warrant a Fuhrman nuclear grade 4/4. This case was reviewed in the Consultant's Conference on 12/9/11, with consensus as to the diagnosis."
--David0 -
Another thing in common...Texas_wedge said:Helping others
Great to hear how well you're getting it all back together Judy. I feel sure our mainstays here, Garry (iceman) and Gary will welcome your assistance in helping newcomers when you're well settled into your new 'normal' life.
We look out at a "lake" with an island in it, on the other side of the fairway which our garden borders, but it's really just a large pond. Is the lake you love a big one? Boating? Lakeside barbecues?
I live on a lake as well, not uncommon in Michigan, but just one more similarity.0 -
small and agressivealice124 said:Fuhrman grade
First ned is always the best - congratulations djc2.
I guess I inadvertently missed your earlier postings of stage 1/grade 4 dx and find myself staring at the screen. Isn't this extremely rare? Has your doctor ever given any background that could possibly explain such a small tumor but such a high grade?
Also, here's another question that probably everyone here knows the answer except me. Does a grade 4 ALWAYS have sarcomatoid features or is there grade 4 without sarcomatoid features?
Dear Alice, Tex and others,
No one has explained my unusual presentation of such a small, yet agressively evolved tumor. Even for the clear cell subtype, even my surgeon, who is very experienced (many hundreds if not into the thousands of surgeries and chief of urology at Massachusetts General Hospital) has not seen it before. I searched for other examples and studies which contained conditions like mine, but could not find any this extreme. Consequently I have very little precedent by which to divine my future. I'm sure you can see why the debate about how significant grade is relative to stage and other factors is very interesting to me...But cancer makes us all aware of our uncertain futures, and I believe each of us has a unique manifestation and response to this disease. That is why reading your stories inspires me....one disease broken like light coming through the trees into so many faces...so many possibilities... When I think of my condition I try to focus on what I do know and can do. I'm still here. The Sun is out today. So far so good. I hope I can tell you for years to come that it is possible to have had an extremely agressive cancer and live a full long life. Best, Dean0 -
Grade 4Texas_wedge said:Vigilance
Liz, I endorse what you say about no bankable statements being possible with 'the sneaky disease'.
Your experience, along with those of many others, makes me wonder whether you truly had a 'recurrence' or whether it was actually a new primary, arising from circulating tumour cells that didn't derive from the original tumour. Perhaps some of us have systems where the radar is down at a critical time, allowing a tumour to develop and this can happen again, years later, without any connection with the first tumour.
After all, with your first occurrence it happened spontaneously - no-one suggested it must have come from an undetected previous tumour (if they did, we'd be into an 'infinite' regress) so, logically, why assume that the second occurrence is directly related to the first? I would welcome any comments board members care to make on this bit of speculation!
I take the opportunity to join Gary in enquiring how you're getting on and to sincerely hope the answer is a cheering one.
I may be mistaken David, but I believe that all sarcomatoid cases are classified as Fuhrman 4 but not all grade 4 cases have sarcomatoid (or rhabdoid) features. So, if I'm correct, the answer to Alice's question is: Yes, you can be grade 4 without sarcomatoid de-differentiation.
This may all change since the Fuhrman classification is widely regarded as past its sell by date, although it is still the standard grading accepted in the West at the present time.
In case it gets overlooked, may I repeat my request for comments on my speculation about 'recurrence' in my posting above under the heading "Vigilance"?0 -
LakeTexas_wedge said:Helping others
Great to hear how well you're getting it all back together Judy. I feel sure our mainstays here, Garry (iceman) and Gary will welcome your assistance in helping newcomers when you're well settled into your new 'normal' life.
We look out at a "lake" with an island in it, on the other side of the fairway which our garden borders, but it's really just a large pond. Is the lake you love a big one? Boating? Lakeside barbecues?
Yes Tex, The lake I love to go to is quite large. It is part of what they call the "Finger Lakes" in upstate NY. It is close to 50 miles long and at its widest, 2 miles. The Finger Lakes were formed many many years ago by glasiers. Lots of boating and BBQ'ing ect. Boating was one of my favorite things to do. Unfortunately we sold the boat when we got divorced. I will have another one someday though. Your home sounds absolutely gorgous. Flowers,fairways and a biig pond.. what more could one ask for, huh. I am kind of partial to .. errrrr.. dare I say.. England. Only because I have been there before. lol0
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