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Pathology report

NomadicMike's picture
NomadicMike
Posts: 33
Joined: Feb 2013

Final pathologic report says clear cell RCC, TNM Stage pT2a, Nx Mx, Furman Grade 3, surgical margins negative, sarcomatoid features absent, no lymphovascular invasion and no renal capsular invasion.  Size: 7.6 x 6.8 x 4.9 cm, weight: 196 grams.

They did not remove any lymph nodes for study in pathology - I guess because it 'looked' clean?  Hence the 'Nx' instead of 'No'.  I'm not really sure how they determine that.

He declared me NED, which I guess they would do with everyone that has clean margins and no invasions?  His guess is that I had a 90% chance that the surgery will be my only treatment.  I get scanned again in 6 months, then 8 months, then yearly.

Anyway, I was really happy with it!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I bet you were, Mike, and so am I for you.  Your interpretation is exactly how I view it and all sounds fine.  I reckon the fact that everything looks good, with no reason to suspect compromised lymph nodes, and no visible evidence of enlargement, justifies having left them well alone.  Having done so means they have to say Nx since they haven't removed any for examination so they're not in a position to say N0. There are so many nodes and they're so small and some so deep that no-one can safely stick their neck out and say you'll never have an effected node.  However, the lack of need to remove any for examination, I suppose, means that Nx is actually better than N0 in your situation!

Turned out nice hasn't it?!

todd121
Posts: 496
Joined: Dec 2012

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

NanoSecond's picture
NanoSecond
Posts: 505
Joined: Oct 2012

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.

todd121
Posts: 496
Joined: Dec 2012

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

 

NomadicMike's picture
NomadicMike
Posts: 33
Joined: Feb 2013

I asked my surgeon about the probability tools and he said there are so many variables they don't account for that they can sometimes be off quite a bit.  So, I asked him based on his experience and my particular scenario, what he thought my chances of recurrance was.

My surgeon at UCLA is a Urologic Oncologist, so I think he does have a good balance between just being a board certified surgeon and an Oncologist.  He actually wrote one of the books they use in Universities to teach: "Renal and Adrenal Tumors: Biology and Management"  His name is Dr. Arie Belldegrun.

I've been extremely pleased with him.

 

todd121
Posts: 496
Joined: Dec 2012

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

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

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.

Eims's picture
Eims
Posts: 409
Joined: Feb 2013

thats excellent news....

eims

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

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.

 

 

 

 

 

 

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

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's picture
foxhd
Posts: 1856
Joined: Oct 2011

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.

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

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

foxhd's picture
foxhd
Posts: 1856
Joined: Oct 2011

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

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

Rather than worrying about the job impacts of sequestration (I work as a government contractor), I think I may just enjoy the remainder of the federal fiscal year, if it comes to that.  I can work next year.  Maybe a summer vacation would be nice.

Just don't want to lose my life, health and disability insurance.

GSRon's picture
GSRon
Posts: 1129
Joined: Jan 2013

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....

todd121
Posts: 496
Joined: Dec 2012

Wishing I'd bought some a few months ago. I was looking into it pre-tumor diagnosis, but decided against it. Really I don't need it. My sons are grown. Graduated. One married to a woman and his career. The other married to his art and music. :)

I saw an ad recently on the tv about AARP life insurance. The ad said how easy it was to qualify. All you had to do was answer 3 simple questions. I sent for the informatino and it arrived. I have to laugh! It was so funny. The "first" question was a run-on sentence (worse than my usual ones) that was nearly a paragraph, basically asking if you'd ever had a diagnosis of any type of cancer, listing all of them. Lol.

I'm so naive.

I don't suppose anybody will be selling me life insurance. Better odds at the roulette table.

Todd

 

NanoSecond's picture
NanoSecond
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Joined: Oct 2012

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.

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

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

 

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's picture
NanoSecond
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Joined: Oct 2012

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...

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

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.

NanoSecond's picture
NanoSecond
Posts: 505
Joined: Oct 2012

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...

garym's picture
garym
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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's picture
MDCinSC
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All other issues aside, there is always Lagavulin!

garym's picture
garym
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Joined: Nov 2009

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

MDCinSC's picture
MDCinSC
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Besides, if it is old enough to drive, its old enough to drink. . . ummm hold that. I have a teenager who drives! Embarassed

garym's picture
garym
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You really are a puppy, my youngest is 31 and my oldest grandchild will start driving in about 2 years, but I'm young compared to tex ha, ha.

MDCinSC's picture
MDCinSC
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My oldest is 46! I'm 66 going on 15! Innocent

garym's picture
garym
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Then I guess I should be more respectful of my elders.  LOL

todd121
Posts: 496
Joined: Dec 2012

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

Rannf
Posts: 8
Joined: Mar 2013

Received path report by accident from my family dRotor updating my records.  After looking them over found that Lymphovasular Invasion was suspected and tumor extention in to pelvicaliceal system suspected.  My surgeon said that everything was clear and I really didn't need to see an oncologist, but after reading this I made an appointment right away.  It's been 3 months since my surgery  I thought that everything was fine but after reading some of the entries I am not so sure anymore.  Tumor was 5.2x3.5x3.4c cm. grade 3 on the Fuhrman scale.  Has anyone else had the surgeon say all clear then realize you need to have things looked into better?

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

"Has anyone else had the surgeon say all clear then realize you need to have things looked into better?" 

Please folks, stop giving the answer to Rannf after the first thousand confirmations!

When you get your Onc's response, Rannf, please let us all know what the conclusion is.

Rannf
Posts: 8
Joined: Mar 2013

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

icemantoo's picture
icemantoo
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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 

angec's picture
angec
Posts: 615
Joined: Mar 2012

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

todd121
Posts: 496
Joined: Dec 2012

Your pathology must have mentioned a stage? For that size tumor it should be either Stage 1 or Stage 3, depending on where the tumor had grown.

In any case, update us when you've seen the oncologist. I think there are those of us whom the surgeon said all clear (or implied all clear) and not mentioned we might want to consult with a medical oncologist. I think the point being that they surgeon planned to follow you as long as he/she could until you needed another specialist hoping you might not. I'm supposing. Why not ask the surgeon?

Best to you.

Todd

NomadicMike's picture
NomadicMike
Posts: 33
Joined: Feb 2013

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?

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

I don't think that is by any means typical Mike and you should keep you team on their toes with careful monitoring.  Even with grade 3,  it seems a surprising amount of necrosis considering that you don't have any sarcomatoid de-differentiation.   I would be inclined to ask for thoughts on why you have so much necrosis, at your next appointment.

Limelife50's picture
Limelife50
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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

NomadicMike's picture
NomadicMike
Posts: 33
Joined: Feb 2013

I seem to go between good news and not so good news.  Doing more research, I do see that necrosis is only present in about a third of cases and it seems like it could be an indicator of a more agressive form, but it is controversial.

So, I have lots of good things on my report, but a few bad things: the size, the grade and the necrosis.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Mike, there's not really any room for doubt that the necrosis (when it's not the result of successful drug therapy) is indicative of an aggressive histology.   Your tumor isn't particularly large and the grade isn't 4 so the necrosis is the least welcome feature.  It occurs because the tumor is growing faster than it can lay on its own blood supply so, typically, the inside of the tumor starves and dies off.  The bad news is just that the tumor cells are proliferating at a rapid rate if they are putpacing the blood supply.  Hence why it will be as well to have frequent scans for the time being to keep a close eye on what's happening.

NomadicMike's picture
NomadicMike
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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!!!! :-(

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.    :(

DonMiller's picture
DonMiller
Posts: 92
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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.

rae_rae's picture
rae_rae
Posts: 264
Joined: Oct 2010

Just to offer a little encouragement. I had my left kidney removed in Oct. 2010, the big slice with many complications. It was about 8 x 9 cm, stage 2a NxMx, some sarcomatoid features, lots of necrotic tissue (in pretty colors as I recall Cool) grade 3/4. I get scanned every six months and so far, so good! The "scanxiety" does get better. I used to start paying attention to every little ache and pain right around scan time just know that my cancer had come back. After a couple years (wow time flies) I can honestly say I don't think twice about it. It's more of an annoyance than anything to have to get poked, prodded and scanned.

Stay on top of your follow up care and remember to live. Laughing

NomadicMike's picture
NomadicMike
Posts: 33
Joined: Feb 2013

That does make me feel better.  Did you start with 6 mo scans post op?  I'm thinking of doing 3/3/6.

rae_rae's picture
rae_rae
Posts: 264
Joined: Oct 2010

I only had a chest xray at three months as that's what my first urologist suggested all that needed to be done was that. I have a different urologist now and follow up every six months with my oncologist now. Just saw him today and my hematoma from surgery has shrunk from 4cm to 2cm so they are very confident it is not cancer, just a stubborn leftover of surgery from over 2 years ago.

He suggested I have scans once a yr from now and personally I am good with that. You have to remember that there are far more that are doing well with NED after surgery than those that develop mets. Be optimistic and pay attention to your body.

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