Pathology report

Texas_wedge said:

un-scottish too

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.

I have not seen the book - but I will look for it.

However there is one interesting mistake that he seems to have made (based on your description) and one that even Dr. Robert Lustig makes in his lecture "Sugar - The Bitter Truth".

Alcohol (to be precise, Ethanol) is NOT a carbohydrate.  They are close - but not the same animal at all.

And it may be quite signifigant to note that.  As I think you know there is a correlation that shows that imbibing a reasonable amount of alcohol actually lowers the risk of renal cancer (while perhaps raising the risk for many others).  A "reasonable amount" means the equivalent of one or two glasses of wine or a shot of whiskey, etc. 

There is enough to this notion that I actually do think the Block recommendation can be ignored - as far as RCC goes. Of course, for metabolic reasons, the alcohol should not be ingested on an empty stomach.  That is why the idea of a glass or two of (preferably) red wine - but only taken with other food - makes sense.  Red wine is recommended because it contains Resveratrol - but I don't think that actually has any bearing on the favorable RCC correlation.

Anyway, more food (well, drink) for thought.

BTW, I think Dr. Biffa is absolutely right about the nasty things being added to spirits. Unfortunately that includes Tonic Water. Damn. There goes my G&T's...

Rannf said:

Thanks, sorry if this annoyed

Thanks, sorry if this annoyed you.  It was a realization that things might not be all taken care of with just surgery.  

Rannf,

I do not believe that Tex or anyone else is annoyed with you. I believe he suggests that you get confirmation when you visit the Oncologist rather than rely on a bunch of amatures.   The size of your tumor is at the lower end for follow up problems, The good thing is that even if there is a small problem there are many on this board sucessfully seeing there way forward.

Icemantoo 

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 played with it with similar results, TW and agree with your frustration. I was annoyed the first oncologist I saw used the damn thing to advise me on whether or not I should consider adjuvant therapy. In general, I follow all you had to say but take exception to the 1cm tumor being impermissible for stage 2. The model is correct about that. Stage 2 has be be > 7 cm. Something it appears the programmer actually got correct.

The rest of it, you're dead on. It doesn't make much sense. Leaving off the grade is particularly annoying, as many of the studies I've looked at use this in addition to the stage to predict outcome. It would seem to be an important input to such a model.

I found the lack of definition of the selection criteria to be annoying too. I'm surprised grade doesn't show up, but type of symptoms do, which seems to be of no value at all.

So the best thing to do is to see an RCC specialist. I found the number my urologic oncologist spat out to be as useless as the nomogram. It takes some digging to get good data. Doesn't it?

Best,

Todd

I had my surgery in October.....pt3a  grade 3.   My tumor was 11CM and invaded the sinus fat which got me Stage 3 and it looks from your picture that I am a little older then you.  No symtoms or anything.  I don't know  much compared to the folks on this board.  In fact I really had no idea what a kidney did or even actually where it was.  

I don't think it is a great idea to spend alot of time on the internet especially with those prediction tools.  They just drive you crazy.  The fact is we are all at risk of a reoccurrence and it is hard to get used to.  After giving it thought I decided to be monitored by my oncologist and not my surgeon.  Althogh my surgeon certainly has the qualifcations and ability to do the job, I think it general they are focused on surgery and tend to lack a broader perseptive on health and have egos larger then even my tumor.  

The other thing is you really  have to allow your body ro recover.  I went back to work after three weeks and it was a mistake.  i am a lawyer and tried to smaller case a month after my surgery and I became completely exhuasted.. I went to my Doctor to complain and he said " Don you didn't have a **** root canal" .  He was right.  You gpt tp take it a bit slow for a bit.

Rannf said:

Thanks, sorry if this annoyed

Thanks, sorry if this annoyed you.  It was a realization that things might not be all taken care of with just surgery.  

Dear Rannf, it is very obvious that you are very worried and perhaps still in shock over the diagnosis.  Having cancer is certainly very scary!  Everyone here on the boards will feel so much better once you have met with your oncologist. Evey cancer patient should have one any time a diagnosis of cancer has been had.  As long as you follow up and keep on top of things you should be ok. There are plenty of meds out there now that keeps this disease a chronic but treatable disease.  Try to relax, meditate and keep busy. Try to focus on being positive, exercise if you can or take some walks, it lifts the mood.  I know you are scared but know that there are many here pulling for you.   In the meantime I will be praying for you!  Xxoo

NomadicMike said:

I'm stage 2a

Stage 2 starts at 7cm, so I'm just barely that.

I guess my other concern is that it says my tumor had 'extensive areas of necrosis and hemorrahage', '60% necrosis'.  Is that typical?

Glad to hear you are doing well Mike,just to be on the safe side why not do those scans every three months for the first or maybe two years.I am not a doctor but i have been  around here for a while and i think you will be fine its just that you have a higher grade of RCC so i am sorry i think you really need to be a little bit more aggressive on your follow ups

NanoSecond said:

Spirits

I have not seen the book - but I will look for it.

However there is one interesting mistake that he seems to have made (based on your description) and one that even Dr. Robert Lustig makes in his lecture "Sugar - The Bitter Truth".

Alcohol (to be precise, Ethanol) is NOT a carbohydrate.  They are close - but not the same animal at all.

And it may be quite signifigant to note that.  As I think you know there is a correlation that shows that imbibing a reasonable amount of alcohol actually lowers the risk of renal cancer (while perhaps raising the risk for many others).  A "reasonable amount" means the equivalent of one or two glasses of wine or a shot of whiskey, etc. 

There is enough to this notion that I actually do think the Block recommendation can be ignored - as far as RCC goes. Of course, for metabolic reasons, the alcohol should not be ingested on an empty stomach.  That is why the idea of a glass or two of (preferably) red wine - but only taken with other food - makes sense.  Red wine is recommended because it contains Resveratrol - but I don't think that actually has any bearing on the favorable RCC correlation.

Anyway, more food (well, drink) for thought.

BTW, I think Dr. Biffa is absolutely right about the nasty things being added to spirits. Unfortunately that includes Tonic Water. Damn. There goes my G&T's...

You don't need to know anything about golf to be on my bag, but the 19th hole expertise makes you a shoo-in for the job.

MDCinSC said:

Lets hear it for Lagavulin!

All other issues aside, there is always Lagavulin!

But at only 16 its hardly old enough to drink...LOL

foxhd said:

nope

Guitars stay too. However I really should think about thinning the herd. I could use a little cash to finance my vagabond summer lifestyle.

Well, I still have plans to spend the last 2 weeks on the Isle of Man... racing my motorpickle..  If you head that direction, it is a LOT of fun.. and yes there will be a lot of alcohol around, as I tend to hang out with the NI (Northern Ireland) guys...  Last summer I brought over many bottles of good California wine.. it went down well with the beer and the whiskey...  ( I shudder to ask my Onc if alcohol goes will with the Votrient..)..

Ron - I don't want a pickle... just wanna ride my motor sickle....

NomadicMike said:

Yeah, I agree

That necrosis is an indicator of agression and should be enough to warrant bumping up my initial scan schedules to 3 months.  The controvisal part I ment was about necrosis being an independent indicator of prognosis, but now I'm finding more recent articles that indicate that in fact it is:

http://www.ncbi.nlm.nih.gov/pubmed/22261455

 

Boooo!!!! :-(

That study is pretty representative - as you'll see from the various other studies cited in the full text of the paper. There have been equivocal findings with respect to pRCC but that's not of much comfort to you, clear cell, or me, chromophobe, for both of which histologies the findings are unambiguous.