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Rcc Stage t1a grade3.

machij1
Posts: 3
Joined: Apr 2013

Just returned from hospital and terrified. 

Galrim's picture
Galrim
Posts: 277
Joined: Apr 2013

Hi,

Was it clear cell or (subtype if you got that info)? And was there any spreading outside the kidney? 

Im NOT a doctor, but since I sense that you need some re-assurance and comfort:

As your urologist/oncologist hopefully already told you, with a T1a, even at grade 3 you have a very positive outlook for this being the last you saw of your RCC. The risk of recurrence is borderline negligible. Its there, but very very small...(Im assuming there was no spread to other organs).

As far as the fear goes. Everyone of us in here was probably shocked and terrified when we got our initial diagnosis. How we handle it is so very individual, but one advise I can give you, which I think everyone can connect to, is that you need to look for the positive things, the upside.

You were caught early

As RCC´s go they dont get much smaller than yours

You will be watched and checked and followed intensely by your medical team to catch any recurrence early

You have/had cancer. Period. Not gonna change, and thats a process you have to get through, accepting that as a fact. When I say this its not to be harsh, but because my experience is that the acceptance has A LOT to do with getting rid of the fear, and that voice in the back of your head that keeps repeating "cancer cancer cancer".  

Life is still life. Youre still here. Dont let the fear take control. Greet it, talk to it once every day, let it in. But once fear has gotten its allotted ten minutes, ask it to bugger off because you got a life to live to the fullest...

And if you need someone to talk to, or just listen, that understands what goes through ones head in your situation, then you have come to the right place :-)

Wishing you a speedy recovery.

/G

Eims's picture
Eims
Posts: 420
Joined: Feb 2013

my tumour was the same size and grade and my doc said that the chance of reoccurance was really, really small but i am with galrim on this......

eims x

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Oh talking about grade and size of tumors is almost like having to watch a romantic movie with my wife.You know my tumor was 5 centimeters and a grade 2 heck with that i would have bet money i would never get a recurrance oh well this is why i dont gamble very often.First we need to accept our situations and then move on with our lives and as far as small tumors go those of you with them will never have to worry again and what are those odds for small tumors maybe 90% so what that means is 90 out of 100 people will never have to deal with this crap again but cmon now like i have said before no one is special and in order to round out the 100% ten of us will face that reallity dead on(no pun intended)!!

djc2
Posts: 17
Joined: Nov 2011

My tumor was classified as t1a grade 4 with 50% sarcomatoid features after it was removed in August, 2011.  It is unusual to have such a small tumor with such a high grade.  At this time my doc characterized my prognosis as "good to excellent." (He was cautious about the grade.)  So at grade 3 your prognosis is likely even better.  We went on three month checks for a year to be vigilant due to the high grade and sarcomatoid charateristics, but after 18 months nothing has shown up and we are going to 6 month checks now.  The fear is real and you are certainly not alone in this.  On this site many will offer you good advice in coping with the emotional aspects of this ordeal; I offer my experience here simply to provide you with good reason to be optomistic that your future will be cancer free.

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

djc2, I still regard your's as a particularly interesting and potentially valuable case.

Do your docs have any explanations to offer of how such a tiny tumor got to be 50% sRCC and why you've had the good fortune to have no mets and no local recurrence.  It appears to suggest that even a high percentage of sarcomatoid de-differentiation doesn't necessarily presage any local spread OR dissemination via either the bloodstream or lymph systems.

Galrim's picture
Galrim
Posts: 277
Joined: Apr 2013

Even if disregarding grade, necrosis degree etc, size matters. So it may be that the small tumor size, even though grade 4 and sRCC, played a part?

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2735023/

about the link between size and recurrence...

 

/G

djc2
Posts: 17
Joined: Nov 2011

Dear Texas_wedge,  My doctors have offered no explaination for my unusual case.  As you have suggested in the past, my doctor believes that the size of the tumor is the important thing in predicting reoccurance...perhpas this is especially true in very small tumors, no matter what the grade and % of sarcomatoid de-differentiation.  My peace of mind--- and my physical health--- are pinned to this theory, but the experts just don't know; and my doctor is mindful of the sarcomatoid characteristics, which is why he suggested 3 month surveillance up till now.  I guess there are too few of us with low stage/high grade sarcomatoid characteristics to support any reseach on this question.

My personal belief, based upon no scientific evidence at all, is that sarcomatoid de-differentiation may be related to the rate of tumor growth only and therefore only indirectly related to spread or dissemination.  If this is so, small sarcomatoid tumors removed have as good a chance of resulting in a cure as small tumors that are not so characterized.  But if they are not removed, and they grow rapidly, they can become more dangerous. (This is why I feel it is important for people diagnosed with very small tumors to be vigilent if they do not immediately opt for surgery.)  But this is only my instinct and not science, so I would caution anyone reading this to take it as such.

Thanks for all you do to help.  I promise I will keep you posted about my journey and let you know anything I may find out about this issue.

 

todd121
Posts: 580
Joined: Dec 2012

I've seen in a few places the claim that grade is an independent prognostic indicator of future recurrence apart from size. It's one of the claims that made me nervous about my prognosis since not only was I Stage 3 but also Grade 3.

I just did a quick search and found, for example, this paper:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1471767/

That said:

"Tumor grade is an independent prognostic indicator for RCC. The Fuhrman nuclear grading system projects 5-year survival rates of 89%, 65%, and 46% for grades 1, 2, and 3 to 4, respectively, independent of T stage.4 Alternatively, in patients with T1 disease, 5-year cancer-specific survival rates have been reported to be 91%, 83%, 60%, and 0% for grades 1, 2, 3, and 4, respectively.4"

But I'm pretty sure I've seen that claim in several other papers and not just that one. Now, it might be that they really have had trouble in their data separating the two factors (maybe they just don't have many samples of small grade 3 and 4 tumors in their data?) and their conclusions are faulty because of that.

This claim is what has made me nervous that we continually tell people here with small tumors that they are almost definitely cured by nephrectomy. It appears to be more complicated than that. For sure small tumors that have invaded the veins such as mine (I would have been Stage 1 but ended up at Stage 3 because my tumor had invaded the veins) seem to be a higher risk than small tumors that haven't. It appears the data suggest that Grade is also important.

I wonder if anyone has seen data that show how closely coorelated size alone versus grade alone are? There must be measures of the coorelation available in order for them to make this claim in papers such as the one above.

Todd

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

A few quick comments, Todd. First, it's all a lot of tosh and should be binned.  Predicting for individual cases from statistical generalisations (and poor ones at that ) is worthless.  Next, the data are invariably out of date.

What is known for certain is that the significant predictor for likely outcome is tumor stage and not grade.  Moreover, Fuhrman grading doesn't apply to chromophobe or papillary RCC. 

The claim that small tumors are successfully cured by surgery in the great majority of cases is based on very solid evidence.

We're moving beyond the old predictors with better-based ones such as the mGPS - see, for instance, a study at

http://www.ncbi.nlm.nih.gov/pubmed/21266974

todd121
Posts: 580
Joined: Dec 2012

Hi TW,

Predicting for individual cases from statistical generalisations is worthless?

But isn't that what we are doing when we tell people with small tumors they are cured?

Truth is, we don't know. We can't tell an individual with certainty what will happen to them. I agree with you there. So then we resort to likelihoods, and that's what the statistics are: likelihoods. Odds. And that's what we're resorting to in the end both in the optimistic and pessimistic cases.

Maybe the studies are wrong, but there were studies that showed that grade independent of TNM stage was an independent predictor. I was talking about clear cell RCC. Yes. What I have and explaining why I continue to take it seriously. I remember coming in here with a 6.8cm tumor pre-surgery and having been told by my doctor that it was a Stage 1, and being told by several people here that I was likely going to be cured. And then I remember finding out it was Stage 3, because even a small tumor can be in the center of the kidney and invade veins, and then finding out it was Grade 3, which I've been told and have read implies it's a more aggressive cancer that is more likely to lead to metastasis. My odds, if you will, went from a 10% chance of it coming back to a 40-50% chance of it coming back with one phone call from my surgeon following the surgery.

So, let's just say we hope those with small, localized tumors are better off. We'd love them to be. I would to. Of course I would.

Maybe it's even ok if people leave here thinking they are cured and don't worry about it anymore. I wish I could forget about it, and maybe it would be best if I did. On the other hand it's a serious disease, and it's serious even for those with small, localized tumors and they should at least do their scans, maybe watch their diet, get their exercise, keep their stress level low (as shown by your article above), do whatever else they can to affect the chance of it returning. And still it might come back through no fault of our own and it might even be years later. It's an unfortunate situation, but that's what the situation seems to be.

Todd

P.S. If you can show me the study that proved that Grade is not an indpendent predictor (I'm talking about clear cell RCC), I would be glad to see that data/study. It would take a load off my mind. When you said "What is known for certain is that the significant predictor for likely outcome is tumor stage and not grade." did you mean TNM stage? If grade is not of a predictive value, why do they continue to categorize and report it along with stage? Thanks TW.

Galrim's picture
Galrim
Posts: 277
Joined: Apr 2013

Grade *is* a prognostic factor. I dont think anyone is arguing against that.

The discussion here is whether or not it can be used as a standalone dominating factor or not. And the core of that discussion is, in my opinion, the weigth it has as a prognostic factor depending on the other factors involved. Stage, necrosis etc.

If you look, as Texas already wrote, at the overall statistics, stage goes before anything else. Then you can start subdivisions of the statistics. T1 with grade 1, grade 2, grade 3 , grade 4. T1 grade 2 with necrosis. T1 grade 3 without necrosis and so on and so on.

But when comes to a question as the one that started this thread, if to give any advice or re-assurance considering that were not doctors and we dont know all the patient-specific details, going with the most dominating factor and the related statstics seems to be a pretty sane choice.

Does a T1 grade 3 have higher risk of re-currence than a T1 grade 1? Most likely, but then were getting into someting very patient-specific which no one here can advise about. However, its still a T1, and its still goes into the T1 statistics. I hope you get my drift here...

/G

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

Todd, fair enough - I think you've laid it out well for a useful dialogue and, I hope, a bit of clarification.  I think you're over-generalising but, of course, in my condensed remarks above, I was doing the same thing so I must thank you for drawing that out.

"But isn't that what we are doing when we tell people with small tumors they are cured?"

Well, I don't think anyone here gives guarantees. The one who constantly reassures people, to their great relief and benefit, is iceman and he always talks in terms of high probabilities, not absolutes.   The basis for that is a huge amount of data related to progression-free survival in respect of small tumors and is thoroughly well-established so it's sound enough reassurance.

I think there are several factors involved here that need to be considered.  First there is the volume of data.  For some of the predictive claims this is substantial, with more than adequate sample sizes to be defensible on that ground.  Unfortunately many predictions expressed in terms of percentages, given to individual patients by doctors who have next to no understanding of statistics, are not based on a sufficient amount of information to vindicate the probabilities they are proffering. 

Next, there is the matter of the age of the data.  On survival with small tumors, the age of the data is a favourable parameter - a large accumulation of records over an extended period showing the low recurrence rate after nephrectomy is reliably indicative of the value of the intervention and the generally excellent prognosis (but again not a guarantee for any individual case).  It's difficult to imagine how this conclusion could be subverted in future - unless some genetic or,  much more plausibly, some environmental factor(s), caused the occurrence of many, much more aggressive, small tumors. 

Now, that's at the good end of the  cline of predictions.  It's a totally different proposition with the prophecies of doom.  There, the outputs of many of the useless 'nomograms' and 'calculators' (made available to the public with advisable circumspection - hedged about, as they usually are, with disclaimers and caveats by the lawyers  who've been brought in) are based both on inadequate amounts and also on very old data (in RCC terms) that, unavoidably, completely fail to take into account all the recent advances which make renal cancers now, for many, more of a chronic than an acute condition.

Next, there is the matter of confounding factors. The survivial calculators are extremely crude even though they may have an authoritative feel, an attrctive presentation and a specious look or accuracy and certitude.  They may have more or less sophisticated modes of presentation of the outputs and may be unexceptionable in terms of statistical processing and application programming but they can only be as valuable as the feeds they take into account - the old computational adage : garbage in, garbage out.  They are rooted in (maybe best) current knowledge of the predominant relevant parameters, at the time when they were created, and this in a fast-changing field, which is still often informed by intuition and art, rather than science.  The number of factors taken into account are small and cannot possibly recognise the wide individual differences in respect of physiological age, general health, co-morbidities, lifestyle, quality of care, treatments available, treatment compliance, psychological attitude an so on (and on).

I hope that addresses the issues you raised (entirely reasonably) in your third paragraph, and, in particular your saying

"both in the optimistic and pessimistic cases."

On the scope of prediction, I could have thrown in the matter of different "sub-types" (or are they truly different cancers?) but you've made clear that you are referring exclusively to clear cell.

The points you've made about the history of infomation you were given, I believe, constitutes an actual concrete example of several of the points I've attempted to make above - art, guesswork, meaninglessness talk of percentages.  So many doctors - especially the less smart, or less specialist - blithely take what they look up in the calculators as gospel, not mentioning the caveats that accompany the calculator in question or putting their own in instead.  It makes them look good to the less informed patient who can hardly fail to be impressed by the (spurious) look of authority, knowledge and precision it appears to betoken.

It may be little comfort to you but there's no doubt that a sensible appraisal of your prognosis must entail recognition that stage 3 grade 3 is nowhere near as cosy as stage 1 grade 1.  There's no escaping that, but you have to bear in mind that we are now talking of a disease that more and more people are living with (and some with very acceptable quality of life) rather than dieing of.

"So, let's just say we hope those with small, localized tumors are better off. We'd love them to be. I would to. Of course I would."

There is absolutely no question that people with single, small. primary tumors are better off than those with larger tumors (leaving aside the unusual cases of those unlucky enough to have very aggressive small tumors, where the odds tip more against them).

"it's serious even for those with small, localized tumors and they should at least do their scans, maybe watch their diet, get their exercise, keep their stress level low (as shown by your article above), do whatever else they can to affect the chance of it returning"

I absolutely endorse that advice and, aside from the scans and recurrence, I'd say it applies to everyone, whether or not they're ill, with the qualification that I'd take out the "maybe" about watching one's diet!!

In regard to your last para, I just checked my earlier post - I spoke of stage as "the significant predictor" but I didn't state that grade has no predictive value an orthogonal factor. 

When I checked, I saw that /G has already beaten me to the punch with very pertinent comments.  I just hope I've not entirely wasted my time with this post and that I've added a little more to the debate.  All the good studies show that stage is much more important than grade (and Fuhrman grading will soon have had its day, though still of real value at present, as presaged in the article I cited about the mGPS).

I fear that I have not allayed your anxiety, Todd but I feel that when it comes to serious discussion of this serious illness I have to call it as I see it.  However, I will say that your situation is a lot better than that of quite a few of us here who would gladly trade prognoses with you.  I think you'll get along fine, though careful monitoring will always be advisable - just try not to allow your situation to get to you too much - it's definitely counter-productive to be in a constant state of worry.  Fox is our beacon but you could do worse than follow the counsel Vin has just given so persuasively - he's had a worse outlook than you and he's doing fine.

As you may know, I often say that for anyone who is destroying themselves with worry, it's a good idea to seek counselling from, e.g. a good clinical psychologist with experience in helping cancer patients.  They can't make the illness go away but they can help one to keep a more healthy attitude and sense of proportion.

One comfort for you is that you're making it your business to find out all you can about RCC and being proactive is, in itself, helpful.  Some of the information you find is less palatable but it gives you more of a sense of control, to better understand what you're dealing with, and also makes it easier to reach a well-balanced assessment.

 

todd121
Posts: 580
Joined: Dec 2012

I appreciate the feedback from both of you and points are well taken.

Also, thanks for that link on mGPS. I had not heard about that and enjoyed reading about it.

I looked around for something more specific to RCC, and found this. I thought you might be interested. It's a more recent study that is RCC specific.

http://meetinglibrary.asco.org/content/107359-134

Hopefully they would find a predictor that could also be used as feedback for a course of treatment. Wouldn't it be terrific if they found they could offer treatments that would move you from one mGPS group to another, thus decreasing chances of recurrence/increasing survival?

Predictions don't do us much good, so I suppose it's a big waste of time really even arguing over which are good and which aren't, since we've no idea what our specific situation is going to be. That's what we really want to know.

Todd

P.S. I am seeing a psychologist twice a week. I'm actually not doing too badly in that regards. Diet and exercise, I could do better. In June I will take my younger son for a week to Barcelona and a week in Florence, something I've wanted to do for many years. We will also run up for a day to Carcassonne to see that lovely castle there. One thing this tumor has given me is a kick in the ass towards carpe diem, which I think I needed.

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

It's an ill wind that blows nobody any good - it sounds as though June is going to be a great month!

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

Yes, June was great, but so were Ward, Wally, and the Beaver....  :)

Ron

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

Clicking on these links that Todd provided sure did bring back memories,because back in 2011 i discovered all of these web pages doing google searches i could remember going over them many times it felt at times i was obsesed with researching my disease.What i am getting at is having the internet is a great tool since it allows us to become advocates in our health care and not to be insulting but i remember when i was a teenager and young adult trying to prove i had the fastest car,sharing knowledge is a very unselfish act to do but stats are just that stats..

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Reading this thread has my mind spinning.  

Galrim's picture
Galrim
Posts: 277
Joined: Apr 2013

Do you mean the nerdy RCC discussions or spinning because you relate it to your own case?

/G (Damn, reading that post made me miss TW) :-(

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Galrim,

It must be hard losing someone on the forum. In my short time here I have come here almost obsessively and received an overwhelming amount of knowledge and support. You were one of the first to reach out and comfort me.  Reading this thread made my mind spin because I can't decide if I won the lottery or lost it with my incedental finding of what seems to be a very small 1.6 cm tumor/cyst. My surgery is this Thursday so I guess I will know soon.  I keep thinking this is so small compared to others that I should be lucky it was caught so early. Then I start thinking cancer is unpredictable and aggressive this is the worst thing that could happen to me. I think of my young 9 year old son. On a nerdy note, Galrim autocorrected to Baltimore. Have you ever heard that one?

Galrim's picture
Galrim
Posts: 277
Joined: Apr 2013

Hi CM,

You unwilllingly got a ticket for the grand RCC lottery, like it or not. But as those tickets go, you definitely hold one that the majority in here would swap theirs for any day (based on the information you have so far) :-)

That said, I do understand, everyone in here does, that this doesnt make the anxiety and fears go away just because the statistics puts you in the sweet spot when it comes to long term survival/cure.

Yes, you are lucky being caught early and thats the very simple fact that you need to focus on. Does it mean that you are 100% guaranteed to be cured by surgery? No it doesnt, but the best way to handle those fears, in my experience, is to come to terms with the situation youre in, and simply keep repeating to yourself that YOUR odds are almost as good as they can get in this lottery.

Yes cancer is agressive and unpredictable, and until your path report comes you wont know for sure exactly what your outlook is. But as for know, focus on holding on that seemingly winning ticket and get Thurdays surgery over with. You cant do much else right now anyway.

/G

Ps. I guess I could have been autocorrected to worse things than Baltimore. So I will stick with that as my new nick ;-)

GSRon's picture
GSRon
Posts: 1247
Joined: Jan 2013

C. Mom... please try to think good thoughts..  You are not the first person to have gotten more lucky than some of us.. and actually felt bad about it..  Sounds weird on my end, but try to remember that WE all rejoice in good news...  It is part of our "bonding' I think.. Even though we are less lucky..(or are we..??) We (at least me) do not feel any less towards the lucky ones...!   Sometimes things just do not make sense.. they just are...

So, just keep on being the "Mom"... your kid needs you (a lot more than we do...)..

 

Ron Wink

CommuterMom's picture
CommuterMom
Posts: 120
Joined: Jan 2014

Thanks guys....I will try to think positive thoughts.Kiss

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