Pathology report

As you should be, that's a very good report for a tumor that size, CONGRATS!!

That's good news that the tumor had stayed away from your blood supply. Congrats.

Same with me on the lymph nodes. I was told because they looked clear on the scan, so they didn't take any of them for sampling.

With regards to the probability, was that the probability of recurrence? If this was the surgeon doing the quoting, I'd suggest seeing an oncologist specializing in metastatic RCC to give a quote. This type of information from my experience was out of the surgeon's arena of expertise. They aren't very familiar with metastatic disease. The surgeons seem to over state how successful their treatments are and be a bit more optimistic (in a negative way with regards to reality). It's important information. You want the best information available.

This tool lets you calculate your probability of recurrence.

http://nomograms.mskcc.org/Renal/PostSurgery.aspx

For me, it under estimated my likelihood of recurrence. (It estimated it at 13%, but the 2x RCC oncologists I saw both put it at closer to 50%, and one showed me the data on the studies and convinced me he was correct.) My surgeon also suggested only the standard of care (scans every 6 months) and wanted to follow me, but I beat feet to the oncologists. They are the ones that need to be involved should it spread.

Whatever the tool says, I'd still see a medical oncologist specializing in RCC. There are several in the area. Dr. Figlin at Cedars Sinai. Dr. Pal at City of Hope. There are some at UCLA and USC too, but I don't have their names.

Todd

todd121 said:

Good News

That's good news that the tumor had stayed away from your blood supply. Congrats.

Same with me on the lymph nodes. I was told because they looked clear on the scan, so they didn't take any of them for sampling.

With regards to the probability, was that the probability of recurrence? If this was the surgeon doing the quoting, I'd suggest seeing an oncologist specializing in metastatic RCC to give a quote. This type of information from my experience was out of the surgeon's arena of expertise. They aren't very familiar with metastatic disease. The surgeons seem to over state how successful their treatments are and be a bit more optimistic (in a negative way with regards to reality). It's important information. You want the best information available.

This tool lets you calculate your probability of recurrence.

http://nomograms.mskcc.org/Renal/PostSurgery.aspx

For me, it under estimated my likelihood of recurrence. (It estimated it at 13%, but the 2x RCC oncologists I saw both put it at closer to 50%, and one showed me the data on the studies and convinced me he was correct.) My surgeon also suggested only the standard of care (scans every 6 months) and wanted to follow me, but I beat feet to the oncologists. They are the ones that need to be involved should it spread.

Whatever the tool says, I'd still see a medical oncologist specializing in RCC. There are several in the area. Dr. Figlin at Cedars Sinai. Dr. Pal at City of Hope. There are some at UCLA and USC too, but I don't have their names.

Todd

Unfortunately that calculator really is not of much value.

Get thee to a qualified RCC oncologist is the very best advice for anyone dealing with this disease.

NanoSecond said:

Calculator

Unfortunately that calculator really is not of much value.

Get thee to a qualified RCC oncologist is the very best advice for anyone dealing with this disease.

I agree. Although the first medical oncologist I saw (who was not an RCC specialist) used this calculator to tell me that my risk was very low. I'd say, get thee to a qualified medical oncologist who specializes in RCC. I did use this tool and played with it to get a starting point before going and talking to the experts. One of the cool things about the tool is that there is a paper that the tool is based on and you can go and read the paper to understand the tool (and see the basic data even that the tool is using). While it's not very accurate, it's not totally useless, or ridiculous either.

This term "urologic oncologist" is a little confusing. It makes it sound like they have the training of a medical oncologist, but their training and focus is different.

In any case, surgeons in general are a different kind of doctor. It's a God send to have them when you need them, but for many problems the approach is all wrong.

Right tool for the right job....

Todd

todd121 said:

Urologic Oncologist vs Medical Oncologist

Two different beasts. The names are a little misleading.

Medical oncology comes at the problem from another angle. These are the people who study cancer from a hematology/immunological background. They are more like systems experts (if I had to make an engineering analogy). When you look at who is doing research in terms of chemotherapy drugs and studies related to non-resectable cancer, you're going to find the non-surgeons (medical oncologists) very helpful people.

I was very pleased with my surgeon also. But if I'm going to do chemotherapy (adjuvant or otherwise), I would want a medical oncologist. Also, if I want to really understand the research on the new drugs being developed, or if I'm going to get treated for metastatic disease, or talk about risks of metastatic disease, I'd talk to a medical oncologist specializing in RCC.

I don't mean this as a criticism. Nobody can do everything. I wouldn't want my medical oncologist cutting on me! On the other hand, it seems like the surgeons are (for my opinion) a little slow about sending us to talk to medical oncologists about our disease. I had to do it on my own. It's the only way I even learned that there were adjuvant drug trials going on. The urologic oncologist I had never even mentioned that that was a possiblity. Why? I don't think metastatic disease is really his concern. He treats patient surgically and refers them to medical oncologists if they need chemo.

Todd

Yes, and, to take it a bit further, the people we should be looking to most of all for progress in drug therapies are the pharmaceutical chemists, the chemical biologists and the biochemists.

Texas_wedge said:

"Calculators" and nomograms

I think Mike's Uro-oncologist was being diplomatic in saying the calculators can sometimes be off quite a bit.   For application to an individual patient, they should be totally disregarded.  The whole idea of projecting a specific prediction for an individual based on population-based stats is entirely spurious, let alone when that population is a tiny, arbitrarily selected, group.   The idea of using the outcomes of large numbers of patients to give an individual patient some sort of clue as to what (s)he is facing is sensible and is what the experienced expert in the field does when advising his/her patient.   However, the reduction of that procedure to a half-baked mechanism which, as Mike's surgeon aptly remarked, fails to account for so many variables, and which then spews out a precise percentage for a person about whom it knows next to nothing, is as irresponsible as it is ludicrous.

Referring to the MSKCC tool that Todd mentioned, Neil made the observation that "Unfortunately that calculator really is not of much value." That, too, is far too gentle a description of a ridiculous gimmick that should have been removed in shame many years ago; in fact it should never have been made available.

I've been so unequivocal in what I've said so far that I should now seek to vindicate myself by illustration. 

It doesn't take much examination to see just how pathetic a piece of work the MSKCC 'Nomogram' is.  The first clues are in the sloppiness of the very description.  It's said to be "Post-surgery" without making it clear that it's based on the data obtained immediately after surgery and that the surgery is specifically nephrectomy and not, e.g. surgery for mets.  The summary sentence, beneath the calculator says "This nomogram predicts the chance that patients with newly diagnosed renal cell carcinoma will not have their cancer recur at five years after surgery."  "Newly diagnosed" doesn't normally betoken post-nephrectomy.  Also, it's inept to talk of recurrence "at five years after surgery" - perfectly easy to say "within the first five years" and avoid erecting the 5 year mark into the magic, and frequently cruel, milestone that it's become.   This is just careless writing.  In the same way, there's no excuse for grammatical boobs like "Select a symptoms" - still uncorrected after how many years?!  

Tell-tale signs like these tend not merely to offer targets to pedants, but to reflect the quality of the whole enterprise.  So in a moment I'll look at more substantial matters. 

But first, it's worth noting that MSKCC has left this nomogram still  in place as at my time of writing - March 2013.  It's based on a paper published in 2001 (and obviously written some time before that) using data that stretches back many years earlier than 2000, for instance including a patient who had already been followed up for more than 10 years!  Accordingly, the "predictions" are based on data that comes from before the dawn of civilisation, in RCC terms, pre-dating all of the main currently-used forms of treatment, aside from surgery.   That, in itself, would make this tool completely worthless now.

Now, to look at the actual implementation - was this by an idiot? an incompetent? someone who had no knowledge of the subject-matter? somone with absolutely no pride in his/her work?  The accompanying advice (for which one has to find    http://www.mskcc.org/cancer-care/adult/kidney/prediction-tools   ) includes this:

In order for this nomogram to provide an accurate prediction, you will need to include accurate values for all of the information below.

• Histology: Cell type found from tissue removed during surgery.
• Symptoms: Extent throughout the body.
• 1997 pathology tumor stage: Pathologist’s assessment of tumor progression for kidney cancer.
• Tumor size: 0.001 to 20 cm.

Wow - so much information!  But the prize, if one can supply "all of the information" with "accurate values"  is "an accurate prediction".   How grateful one must be that the prediction will be "accurate"?  

 

So, let's look at the required information.  

Histology:-  one is offered only the choices of  "None, chromophobe, conventional and papillary".  Even at the time of creation of the nomogram, sarcomatoid de-differentiation was all too familiar and accounted for maybe around 5% or so of patients, even at time of nephrectomy, and is a crucial factor in survival.  It makes the most swingeing difference. yet no account is taken of it.  It's much commoner than the rarer sub-types so there's no excuse in terms of rarity of occurrence.

"Select a symptoms" :-   we are offered the options "None, Incidental, Local, Systemic"  with absolutely no clue as to what these terms are intended to designate, in terms of the "Extent throughout the body".  I can't tell what would be included in "Systemic" and have no notion as to how "Incidental" relates to "Extent" (it seems like a categorical error to me).

Tumor Stage:-   on offer are stages 1, 2, 3a, 3b, 3c.  There is no stage 4 and it's not likely that we can equate 3c to 4, since the calculated values often show the same result for 3c as for 3b.

Tumor size:-   the allowable entries exclude tumors over 20 cm  and we see members on CSN who have had tumors larger than 20 cm. so that is an unsuitable cut-off point.  To make matters worse, the minimum permitted size is a tumour measuring 1,000th of a cm i.e. an invisible tumor and how many of those do we see?

There is no reference at all made to grade and although we know that the prognostic significance of stage is much greater, grade is also an important factor in RCC progression.

Let's look at a real-life example.  I want to assess my own prospects but I have no opportunity to reflect that my histology is mostly sarcomatoid.  Since I'm certainly not a clear cell or papillary case, I put in chromophobe, which is my underlying (original) histology. I actually get the same prediction if I put in None, that is, better than for papillary and much better than clear cell.  (I know that if there were provision for sarcomatoid, the prediction should be by far the worst.)  I know that my tumor measured 9 cm so no problem there.  I was at stage 4 but that is also not provided for, so I put in 3c as the best approximation.  All that remains is "a symptoms".  I had no recognised symptoms after nephrectomy, so I put in None. On the other hand, dx was a result of investigation of frank haematuria, so should I instead enter Incidental?  In point of fact, it makes no difference whether I enter None, Incidental or Local - all give the same result of 88%.  Only Systemic changes the prediction - to 73%. 

The reality, of course, is that with my pathology no-one expert in RCC would have predicted that I would even survive for anything like 5 years, but here I am being told I would have had an 88% chance of being progression free after 5 years, at a time when none of the newer therapies existed!

It's interesting to see that if I hold the other parameters constant but put in stage 3b it makes no difference but 3a gives 94%.  Moreover, at the earlier stage of pT2 my prediction falls to 91%.  Crazy!

It may be objected that MSKCC say I should be using the Nomogram along with my doctor.  The latter could then say - it just doesn't apply to you - you're off the charts so it can't be faulted just because the closest we can get for you is 88%  when it should be 0%.

However, consider diifferent cases.  For example, for a proper chromophobe case, with no symptoms, a 1 cm tumor at stage pT1 gets 98% and at pT3c it gets 96% but pT2 is an impermissible value! Apparently you can't have a 1 cm tumor at pT2, though you can at pT1 and pT3a/b/c.

It makes perfect sense to error-trap for fields in which the user creates the entry (as against selecting from a menu) but it must be done intelligently, with some knowledge of the material.  Thus, it's Ok that it won't accept a tumor size over 7 cm  with stage pT1.  

However, it's perfectly happy to assign a 96% probability to a pT3c tumor (the worst stage it accommodates) that measures 1/100th of a millimetre.

MSKCC have a more recent Nomogram, dating from 2004 (and so slap up-to-date with current treatments!) which is probably less risible but which evidently deals only with clear cell RCC.  So that leaves our Nomogram in lone splendour as their offering for all three main subtypes (with, of course, no distinction between pRCC types 1 and 2) which is why we still have it available for our use or ridicule.

The upshot is something which might have been thought to be a good sales pitch but which, when looked at, makes a laughing stock of MSKCC which is rightly regarded, I don't doubt, as one of the World's great cancer centers.

 

 

 

 

 

 

I had an apparent stage one tumor....Clear Cell with Sarcotimoid features.  According to the calculator, I had a 90% chance of 5 years cancer free.  But, factorin in the Sacomitoid differentiation, the statistics show more like 50% reacurrance.  And maybe worse.  As it happens, I had a solitary met removed 4 weeks ago. 

I can read the statistics, but they make me sad.  So, instead of looking at the stastics, get your scans, and enjoy every day you feel good.  I know I am alive to day, and I am good today.  I have planned my life until my next scan, which is in mid april. 

God willing, in April, I will get to plan until June.

These calculators are of no help to us.  Maybe they are of help to the life insurance companies....but I do not think they will sell me insurance now (if they would, I would buy it).

foxhd said:

screw the predictors

There may be trends which are predictable but most data is based on old information. I don't even want to know my statistical chances. I'm too busy moving forward. Otherwise by now, I would have sold everything I own and would be living in a cardboard box.

You'd never have sold the Harley, the weights or the golf clubs, now would you!

Texas_wedge said:

"Calculators" and nomograms

I think Mike's Uro-oncologist was being diplomatic in saying the calculators can sometimes be off quite a bit.   For application to an individual patient, they should be totally disregarded.  The whole idea of projecting a specific prediction for an individual based on population-based stats is entirely spurious, let alone when that population is a tiny, arbitrarily selected, group.   The idea of using the outcomes of large numbers of patients to give an individual patient some sort of clue as to what (s)he is facing is sensible and is what the experienced expert in the field does when advising his/her patient.   However, the reduction of that procedure to a half-baked mechanism which, as Mike's surgeon aptly remarked, fails to account for so many variables, and which then spews out a precise percentage for a person about whom it knows next to nothing, is as irresponsible as it is ludicrous.

Referring to the MSKCC tool that Todd mentioned, Neil made the observation that "Unfortunately that calculator really is not of much value." That, too, is far too gentle a description of a ridiculous gimmick that should have been removed in shame many years ago; in fact it should never have been made available.

I've been so unequivocal in what I've said so far that I should now seek to vindicate myself by illustration. 

It doesn't take much examination to see just how pathetic a piece of work the MSKCC 'Nomogram' is.  The first clues are in the sloppiness of the very description.  It's said to be "Post-surgery" without making it clear that it's based on the data obtained immediately after surgery and that the surgery is specifically nephrectomy and not, e.g. surgery for mets.  The summary sentence, beneath the calculator says "This nomogram predicts the chance that patients with newly diagnosed renal cell carcinoma will not have their cancer recur at five years after surgery."  "Newly diagnosed" doesn't normally betoken post-nephrectomy.  Also, it's inept to talk of recurrence "at five years after surgery" - perfectly easy to say "within the first five years" and avoid erecting the 5 year mark into the magic, and frequently cruel, milestone that it's become.   This is just careless writing.  In the same way, there's no excuse for grammatical boobs like "Select a symptoms" - still uncorrected after how many years?!  

Tell-tale signs like these tend not merely to offer targets to pedants, but to reflect the quality of the whole enterprise.  So in a moment I'll look at more substantial matters. 

But first, it's worth noting that MSKCC has left this nomogram still  in place as at my time of writing - March 2013.  It's based on a paper published in 2001 (and obviously written some time before that) using data that stretches back many years earlier than 2000, for instance including a patient who had already been followed up for more than 10 years!  Accordingly, the "predictions" are based on data that comes from before the dawn of civilisation, in RCC terms, pre-dating all of the main currently-used forms of treatment, aside from surgery.   That, in itself, would make this tool completely worthless now.

Now, to look at the actual implementation - was this by an idiot? an incompetent? someone who had no knowledge of the subject-matter? somone with absolutely no pride in his/her work?  The accompanying advice (for which one has to find    http://www.mskcc.org/cancer-care/adult/kidney/prediction-tools   ) includes this:

In order for this nomogram to provide an accurate prediction, you will need to include accurate values for all of the information below.

• Histology: Cell type found from tissue removed during surgery.
• Symptoms: Extent throughout the body.
• 1997 pathology tumor stage: Pathologist’s assessment of tumor progression for kidney cancer.
• Tumor size: 0.001 to 20 cm.

Wow - so much information!  But the prize, if one can supply "all of the information" with "accurate values"  is "an accurate prediction".   How grateful one must be that the prediction will be "accurate"?  

 

So, let's look at the required information.  

Histology:-  one is offered only the choices of  "None, chromophobe, conventional and papillary".  Even at the time of creation of the nomogram, sarcomatoid de-differentiation was all too familiar and accounted for maybe around 5% or so of patients, even at time of nephrectomy, and is a crucial factor in survival.  It makes the most swingeing difference. yet no account is taken of it.  It's much commoner than the rarer sub-types so there's no excuse in terms of rarity of occurrence.

"Select a symptoms" :-   we are offered the options "None, Incidental, Local, Systemic"  with absolutely no clue as to what these terms are intended to designate, in terms of the "Extent throughout the body".  I can't tell what would be included in "Systemic" and have no notion as to how "Incidental" relates to "Extent" (it seems like a categorical error to me).

Tumor Stage:-   on offer are stages 1, 2, 3a, 3b, 3c.  There is no stage 4 and it's not likely that we can equate 3c to 4, since the calculated values often show the same result for 3c as for 3b.

Tumor size:-   the allowable entries exclude tumors over 20 cm  and we see members on CSN who have had tumors larger than 20 cm. so that is an unsuitable cut-off point.  To make matters worse, the minimum permitted size is a tumour measuring 1,000th of a cm i.e. an invisible tumor and how many of those do we see?

There is no reference at all made to grade and although we know that the prognostic significance of stage is much greater, grade is also an important factor in RCC progression.

Let's look at a real-life example.  I want to assess my own prospects but I have no opportunity to reflect that my histology is mostly sarcomatoid.  Since I'm certainly not a clear cell or papillary case, I put in chromophobe, which is my underlying (original) histology. I actually get the same prediction if I put in None, that is, better than for papillary and much better than clear cell.  (I know that if there were provision for sarcomatoid, the prediction should be by far the worst.)  I know that my tumor measured 9 cm so no problem there.  I was at stage 4 but that is also not provided for, so I put in 3c as the best approximation.  All that remains is "a symptoms".  I had no recognised symptoms after nephrectomy, so I put in None. On the other hand, dx was a result of investigation of frank haematuria, so should I instead enter Incidental?  In point of fact, it makes no difference whether I enter None, Incidental or Local - all give the same result of 88%.  Only Systemic changes the prediction - to 73%. 

The reality, of course, is that with my pathology no-one expert in RCC would have predicted that I would even survive for anything like 5 years, but here I am being told I would have had an 88% chance of being progression free after 5 years, at a time when none of the newer therapies existed!

It's interesting to see that if I hold the other parameters constant but put in stage 3b it makes no difference but 3a gives 94%.  Moreover, at the earlier stage of pT2 my prediction falls to 91%.  Crazy!

It may be objected that MSKCC say I should be using the Nomogram along with my doctor.  The latter could then say - it just doesn't apply to you - you're off the charts so it can't be faulted just because the closest we can get for you is 88%  when it should be 0%.

However, consider diifferent cases.  For example, for a proper chromophobe case, with no symptoms, a 1 cm tumor at stage pT1 gets 98% and at pT3c it gets 96% but pT2 is an impermissible value! Apparently you can't have a 1 cm tumor at pT2, though you can at pT1 and pT3a/b/c.

It makes perfect sense to error-trap for fields in which the user creates the entry (as against selecting from a menu) but it must be done intelligently, with some knowledge of the material.  Thus, it's Ok that it won't accept a tumor size over 7 cm  with stage pT1.  

However, it's perfectly happy to assign a 96% probability to a pT3c tumor (the worst stage it accommodates) that measures 1/100th of a millimetre.

MSKCC have a more recent Nomogram, dating from 2004 (and so slap up-to-date with current treatments!) which is probably less risible but which evidently deals only with clear cell RCC.  So that leaves our Nomogram in lone splendour as their offering for all three main subtypes (with, of course, no distinction between pRCC types 1 and 2) which is why we still have it available for our use or ridicule.

The upshot is something which might have been thought to be a good sales pitch but which, when looked at, makes a laughing stock of MSKCC which is rightly regarded, I don't doubt, as one of the World's great cancer centers.

 

 

 

 

 

 

Wow Tex.  So, what do you really think?

BTW, do you need a caddy for that foursome?  My golf skills are pretty dismal, but I still want  a chance on that 19th hole.

NanoSecond said:

Calculator

Wow Tex.  So, what do you really think?

BTW, do you need a caddy for that foursome?  My golf skills are pretty dismal, but I still want  a chance on that 19th hole.

I think I'll keep my own counsel about what I really think

I've looked into your caddying prospects and at first sight it seemed as though you would need to be on the tea-caddy (but not green tea, of course) -  vide Block p. 308   "Zero Out Alcohol Consumption."

However, the concept of a Scottish caddy being tee-total is unthinkable.   Ground control, we have a problem.

NanoSecond said:

Exception to the rule

See here, I really can't imagine how that particular injunction on page 308 should apply to Lagavulin. That's just un-American.

Still, in the interest of good science, I think a Phase I clinical trial is definitely in order to settle the issue.  We will first need to figure out the maximum level of toxicity before going any further.

I think Ben Goldacre will certainly demand that all the results be made available - no matter where they might lead us.

So I say publish or perish. And then see if we can even focus by the time we get to page 308...

You seem to be getting a good grip on the fundamentals of caddying already Neil!

Have you, by any chance, come across Dr. John Briffa's book Escape the Diet Trap?  He praises spirits as low carbohydrate foods! (However, in fairness, he says red wine drinkers probably have better cardiac records because they tend to have healthier diets and lifestyles than beer or spirit drinkers.

you'll be pleased to hear that he says spirits become a dietary problem when people add nasty things to them, like fruit juices, lemonade or cola, thus contaminating them with lots of sugar.