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Is there a general consensus of RCC growth rate?

angec's picture
angec
Posts: 664
Joined: Mar 2012

I have been told by two doctors that they never answer that question as they are not sure. However, I have seen several different posts whereby some suggestions were given by their doctors. Some of which stated that RCC can grow 1/2 cm a year or sometimes even 1 mm a year. I guess it depends on what grade it is. Anyone have any first hand knowledge about this?

dhs1963's picture
dhs1963
Posts: 394
Joined: May 2012

There is no consensus.

On line, I have seen rates advertised at 1 cm/year.

However, talking to researchers at NIH, I am told it can be 1 mm/year, which approaches no growth, or several cm/year, with aggressive cancers.

Medical science does not know the answer. And the rates may not be constant for a person over time.

I am trying to dig up older scans from nearby regions to assess the growth rate of my tumor. From what I can tell, in 1992, there was no evidence of disease on a CT scan.

In 2003, I had a liver ultrasound, which should have seen the kidney, but they did not see anything. In 2012, I had a 6 cm tumor identified. Based on that, my tumor grew 5-6 cm in 9 years, or no more than .5 cm/year.

But, we do not know.

angec's picture
angec
Posts: 664
Joined: Mar 2012

Yes, it stands to reason they dont' know. Mom had a scan two years before she was dx'd with 4 cm on kidney and they said nothing showed before. However, looking back on the sonogram report, it did state that there was a shadow near the collecting duct. They never told us and they never called her in to rescan or check it. At that time she had her gallbladder removed. If due diligence was shown by the doctors at that time, perhaps we wouldn't be where we are today. Thanks for the info.. wishing you well!

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

I think that in reality there is a consensus. A lot of different figures have been put out but they usually derive from, or relate to, particular contexts or sub-sets of patients. Over the past few months, on various threads, I've quoted from published expert papers on the subject and given refs. for some of these. It's established that an average growth rate, across the board, ia around 1/3 cm/year but slower with more indolent tumours such as chromophobe ones which are more typically 1/4 cm/year.

However, there is a very wide spectrum and, as dhs saya, it's different with more aggressive cancers and, without doubt, changes over time in the very same patient - my own case illustrates that as graphically as one could wish (or as, personally, I could wish it didn't!).

Angie rightly surmises that it might be contingent on grade and asks if anyone has first hand experience - my first-hand experience is all too real and is as fresh as about 3 hours old. I'm about to give a bit of detail on another thread.

At one end there's very aggressive growth - sometimes so fast as to encompass (partial)death of the tumour as its growth rate outstrips its angiogenic capacity and results in necrosis. At the other end, there's 'negative growth' i.e. shrinkage, which may be consequent upon successful treatment, or spontaneous, deriving from the body's successful immune system activity or from apoptosis in the mutant cells instead of the feared immortality. Our bodies constantly head off cancerous prospects and, usually, thereby keep us safe from this malaise. So,in innumerable cases there is no growth or negative growth but at times some of us aren't so lucky. :(

angec's picture
angec
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Joined: Mar 2012

TW..as always your input is very well respected! I am hoping this is a great week of golf for you, as Mashall. I await your new post. Prayers and well wishes and thoughts going out to you. Please continue your very positive attitude and know we all love you!!

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

Since this topic seems to exhibit recurrence, I thought it's worth mentioning that at the European Urology Association's 28th Congress, which finished 2 days ago, one presentation alluded to this matter and a slide (I've not seen the relevant text) refers to observation of a few hundred small tumors.  It talks of a mean size of 2.8 cm and a mean growth rate of 0.28 cm/year.  The nature of the tumors is unclear from the slide but it appears to show that for RCC the figure for 120 RCC instances was 0.40 cm/year.  This accords pretty accurately with the study by Bosniak et al  many years ago suggesting a mean growth rate of around 1/3 cm/year (and more like 1/4 cm/year for (non-sarcomatoid) chromophobe.

dhs1963's picture
dhs1963
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Joined: May 2012

A 100% clearcell will grow slowly, at .2-.5 cm/yr, acording to my Dr at NIH.  That is what allows the conservative approach many doctors take.  Under Grade 1, a 2 cm tumor will not be dangerous for many years.

The difference comes with the higher grade tumors.  Clear Cell with Sarcomitoid features can grow at rates exceeding 1 cm / year.  In my case, there is evidence that my 6 cm tumor DX'd in 2012 did not exist in 2005 (when I had an untrasound of the liver).  The lung met I had, also sRCC, had grown from undetectable to 1.5 cm in 6 months, suggesting a 3 cm/yr growth rate for the met.

That means that RCC can go from low risk to extremely dangerous with no radiological difference. 

Anther way to put it is, a 80 yo person with a 2 cm tumor that is not aggressive probably has 10 years before the tumor goes from T1a to T1b.  In that case, surgery may not be warneted.

But, if it is agressive, in two years the tumor can grow to 6 cm, and metastisize. That is probably what happened to me. 

Texas_wedge's picture
Texas_wedge
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Yes, indeed - you're echoing what I've said on this forum many times, so just a few additional points.  The very aggressive tumors are the sarcomatoid ones and they are the larger ones. With some exceptions, notably those detected in the young (and more often hereditary than others) small tumors aren't, generally,  aggressive.

I'm not sure I understand what you mean when you say "That means that RCC can go from low risk to extremely dangerous with no radiological difference."  

I think you've made an invalid jump in your last paragraph, haven't you? You're projecting the growth of a primary tumor on the basis of the growth rate seen in your lung met.  It's important to realise that the growth rate of mets is a different story entirely, especially when they are part/all sarcomatoid from inception. There, your own rate of met growth is unsurprising pro-rated to 3 cm/year, from having gone from undetectable to 1.5 cm in 6 months. My first renal fossa recurrence grew by a lot more than that in 4 weeks and the ab wall tumor that I have now grew from 2.5 cm to 5 cm in 23 days which if the growth were linear would equate to almost 40 cm/year and would have already got to 25 cm by now.

todd121
Posts: 641
Joined: Dec 2012

My urologic oncologist said that RCC tumors grow between 0.3 and 0.9 cm per year on average. I didn't ask more detailed questions about what the assusmptions were or where he got this information. I had assumed he was talking about my situation at the time, which was assumed Stage 1 (under 7 cm) tumor hopefully Grade 1 clear cell RCC.

The situation we were discussing was about the "active surveillance" approach to small tumors.

In fact, I had a look at his website just now, and he did say "Studies have demonstrated that small renal masses tend to grow at a rate of 0.1 to 0.8 cm per year." There may be links on his website to help investigate this. www.kidneycancerinstitute.com. I believe this particular quote was more generic (small renal masses) and not RCC specific.

I'm not sure that averages will help you answer your question. This does seem to be in line with what you said above (1/2 cm per year). Did you mean 1cm instead of 1mm?

Todd

 

 

todd121
Posts: 641
Joined: Dec 2012

My urologic oncologist said that RCC tumors grow between 0.3 and 0.9 cm per year on average. I didn't ask more detailed questions about what the assusmptions were or where he got this information. I had assumed he was talking about my situation at the time, which was assumed Stage 1 (under 7 cm) tumor hopefully Grade 1 clear cell RCC.

The situation we were discussing was about the "active surveillance" approach to small tumors.

In fact, I had a look at his website just now, and he did say "Studies have demonstrated that small renal masses tend to grow at a rate of 0.1 to 0.8 cm per year." There may be links on his website to help investigate this. www.kidneycancerinstitute.com. I believe this particular quote was more generic (small renal masses) and not RCC specific.

I'm not sure that averages will help you answer your question. This does seem to be in line with what you said above (1/2 cm per year). Did you mean 1cm instead of 1mm?

Todd

 

 

Texas_wedge's picture
Texas_wedge
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Todd, I hope you'll keep referring people toLandman's site - I've not done so for a long time and it is a cracking site, especially re up-to-date information on minimally invasive procedures and on active surveillance and with good videos thrown in.  It would be hard to find better information on those topics, although there are bound to be some generalisations that one might dispute , e.g. "Today, the majority of kidney cancers are discovered while very small".  Tell that to the increasing number of younger patients we see here who have tumors discovered early in life but not exactly "very small"  e.g. > 20 cm. !!!!  Daisy is our latest in that group and she should be cheered by how wonderfully Chris Boone has done.

Perhaps we can agree a summary on this topic, as at the present time?  Several members have quoted their individual doctors' anecdotal comments, while I've cited the actual major studies on the subject in papers which give real figures from studies researchers have made of numbers of patients.  Among all of the data we've accumulated, there isn't any fundamental dissension from the following, I believe:

  • RCC tumors grow at widely varying rates but on average at around 0.3 to 0.4 cm/yr - shown by academic studies
  • chromophobe RCC typically grows at the slowest rate
  • sarcomatoid de-differentiation betokens much greater aggressiveness and much faster growth
  • growth rate of mets is very different from primaries - e.g.  the second met which I currently have was growing, before I started on Votrient, at 100 x the average growth rate of a primary RCC tumor
  • the usual caveat applies about the inapplicability of group averages to individual cases

 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Tex,

On your 4th bullet point - about the higher growth rate of mets - can you cite any formal studies that might help illuminate that one?

Texas_wedge's picture
Texas_wedge
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Joined: Nov 2011

No, Neil, I'm afraid not but there are possible reasons why that is a questionable question. 

(By the way, I think there's constant case by case anecdotal evidence of the truth of the statement - a rich field is to be found in the frequency with which mets not perceptible at nephrectomy appear at significant size not much later, particularly, of course, if the histology is a very aggressive one - I think my own case is just an especially dramatic example).

Now, why do I say it's a questionable question?  On the 'seed and soil' nature of RCC spread, much must surely depend on the nature of the site of the met, as well as the aggressiveness of the pathology and quite possibly on the modality of spread.  There are doubtless a lot of other relevant factors that contribute to the overall scenario in which there are many more parameters affecting RCC met growth rates than apply to RCC when it's "at home".  D you agree?

By the way, you and I are ships that pass in the night on various sites at present, as well as email.  I owe you a number of replies and also thanks for your thoughtful last email.  You've dropped so much intriguing material in my lap and I'm snowed under with commitments at present so please accept this marker as a proxy for proper replies, pending time to do justice to your posts and links.

While 'speaking' I want to pursue one or two thoughts.   (Just been interrupted by a call from SIL in Fairfield CT so some thoughts have fled.) Theme was personal comparisons, since we both have chRCC although, thankfully, yours isn't sarcomatoid.  I imagine we have similar builds - I've shrunk from 5' 9 1/2"  to about 5' 8" and have lately lost about 8 lb to around 146.  I'm guessing you at about 6' 1" and 170-175 or so.  Am I anywhere close?  I'm a 'universal donor' - i.e. Blood type O and Rhesus negative.  What are you?  I tend to have a high metabolic rate a lot of the time, due to a fair amount of exercise, though dismally little for the past fortnight :(

NanoSecond's picture
NanoSecond
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Joined: Oct 2012

Trevor,

No rush on responding.  Those papers are a bit formidable - but I do think they may have some very useful insights for you.

I am 5' 8" and weigh around 142 lbs.  So we are much closer than you guessed.  I am aiming (very slowly) to get to 140 lbs.  Before I started on my diet (back in August) I was at 162 lbs. I am blood type A Positive.

I presently feel great - the best I have in decades (isn't that perfectly ridiculous?) which I am convinced is a by-product of my diet and supplements.

The key area I am still deficient in is getting more exercise.  I do make it a point to walk briskly at least 1 hour everyday.  And the path I take goes up and down a few steep slopes.  But that is about it.

 

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

I'm sure you're right about the academic papers Neil. 

Several other good talking points here and, before I forget, may I commend you on your walking schedule which is good enough to guarantee considerable benefits.  I'm not in the slightest surprised that you feel better than for a long time and I'm sure you'll have noticed plenty of others saying much the same thing (Todd is likely one such).  I have no doubt that getting rid of the cancer is a factor (!) and I'm equally sure that the exercise is another contributor, if it's something that you weren't doing before.

I've imagined you to be the archetypal lean cerebral academic type and so I was surprised to learn that you were, presumably, carrying some bad weight which you're now happy to be rid of.  Why is 140 lbs your target? You could carry more at our height  with more muscle mass, which is invariably a good idea for almost everyone.

You're right that my guess at our similarity of build is closer than I even guessed! The similarity disappears at some points though. 

I've thrived on heavy exercise all my life and a variety of sports - can't tell you how much better it makes me feel than when I'm less active (like now Frown - but, at least, due to play golf on Friday, if the snow has thawed by then). 

Also, Ive been interested in and fairly sensible about diet for most of my life, in respect of athletic performance, health (never a problem for me until cancer dx at 69) and in the intriguing domains of allergy, food sensitivity and possible implications in various areas of mental health (and physical too, of course) and quality of life.  Perhaps, as a result and maybe a favourable genetic legacy, I may have had less scope for improvement of diet with the resultant benefits.

I asked about blood type.  There, we couldn't conceivably be much more different - you A +ve and me O -ve.  I think more exploration in this area is essential.  We know a bit about the clear relations between different prevalences of RCC sub-types according to gender and to race, to name but two relevant parameters and I'm fascinated to know whether blood-type is another significant variable. 

A little while ago, on the thread entitled "Opinions on High Protein Diets" I responded to a post by Gail (who hasn't pursued it further because these days she spends most of her posting time on KIDNEY_ONC and elsewhere) by saying this:

Gail, it's several years since I was reading D'adamo but his theory struck me (after initially thinking it the work of a crank) as inherently highly plausible. For most of my life I've been fascinated by the complexity of the human body and the ramifications of the biochemical individuality that is so evident. I was intrigued by some of the work of an early luminary in the immunology field - Arthur Coca.

Anyway, on first encountering D'adamo's books, I figured that it would be surprising if our blood type did not interact with the chemistry of what we ingest. After all, differences in blood chemistry are hugely important. For instance, I am a 'universal donor' which makes my blood particularly valuable socially (apart from being fairly important to me!). When I go under the knife on 30th March, it will be crucial to have blood of only my type available for any transfusions I may need because if I were given blood of any other group it would almost certainly kill me. The other obvious example is the Rhesus Factor - blue babies and so on.

I must revisit D'adamo. Your posting led me to look at a site by some enthusiast in New Zealand which contains an (unattributed) table which suggests that with my blood type I would have a tough digestive tract, strong immune system and a predilection for intense exercise, all of which is spot on. The rest of it I'm not as sure about. It also led me on to, ultimately The Weston A. Price Foundation which sounds like a collection of dangerous lunatics. They seem to have totally conflicting policies but appear keen to promote eating as much saturated animal fats as you can. They also advocate reducing your phytic acid intake by all means possible as being a dangerous anti-nutrient. Interestingly, this is another name for IP6, the anti-cancer and numerous other benefits of which I have just been exploring as a result of Olsera's question on the thread "are natural remedies snake oil or promising?"

I wonder if you've speculated on such matters at any time, Neil?  I'd welcome your thoughts.  I'll seek to vindicate this enquiry in the following way:

It seems to me to be a perpetual necessity to rigidly separate observation of phenomena from proffered explanatory apparatuses. To take an ad absurdum example - if a particular homeopathic 'remedy' were observed to incontrovertibly confer some benefit (even one unrelated to its purported function) then it would be plainly unscientific to pooh-pooh it simply on the grounds that the only explanation of its efficacy is one that we find completely implausible.  It may be that there are flights of fancy pleaded in the cause of explicating observed relationships between blood type and incidence of particular ailments such as CVD but we shouldn't disregard the evidence for that reason. It's by scrutinising novel off-the-wall ideas that many advances of knowledge come into being.

 

NanoSecond's picture
NanoSecond
Posts: 603
Joined: Oct 2012

Hi Trevor,

As always with your posts - much food for thought (pun absolutely intended).

First off - at this point I have zero knowledge about blood type, etc.  But you have put it on my radar and so I will try to be vigilent.  Unfortunately, I have so much else cluttering that little radar screen that I am afraid there is going to be an air-traffic control accident pretty soon.  So, in the meantime, please do elucidate more about what you know concerning this subject when you have a chance.

But about Weston A. Price I do know some things. As an organization you may be correct in its having an agenda to promote eating animal fats.  I seem to remember that it was once accused of just being a front for the cattle and dairy agribusiness interests.  I don't know if that is true or not.  However, I have found that a few of its accolytes actually do know quite a lot about cell metabolism and other matters of keen interest.  So which particular lunatic did you have in mind? 

Have you ever read "The Daily Lipid" blog by Chris Masterjohn?  He really seems to know his stuff.

I am not sure about the other Weston Price apologists - but I do know that there are a lot of "paleo" followers who seem to get great comfort from some of his (Weston's) early research.

Of course it is important to make a distinction about diets that may work "well" for otherwise "healthy" people and those who might be suffering from cancer or the threat of metastases.

For me the answer is just to delve deeply into the mechanics of cell metabolism.  And, in particular, the role(s) played by glucose, fatty acids, insulin, ATP, etc. in supplying energy to the cell.  That has led me to investigate the cell mitochondria in particular.  So I was stunned when I came across the magnificent work of Dr. Terry Wahls - as she had figured all this out and actually then applied her medical and scientific skills to remedy her own issues fighting MS. 

In the course of my research I have come to question all sorts of "dogmas" regarding saturated and poly un-saturated fats or just how "harmful" animal vs. plant protein might be.  And those are just for starters.

So, while I am aware of the various agendas that may be out there - I tend to dismiss the "organizations" and focus on those individuals who really seem to know what they are talking about.  Meanwhile I am such a neophyte I have such a long ways to go.  I can only point out, for example, that I have learned a whole lot more from reading Denise Minger's well reasoned criticisms of "The China Study" than I ever did from the original book itself.  And so it goes...

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

Neil, we have so many hanging chads on so many different sites/email, that I'm just chucking out a few very quick thoughts here.

On blood groups, differential presentation of particular maladies and indications for dietary composition, more anon.  For now, I'd just say that, amusingly, your blood group would be said to call more than any other for a vegetable-based diet and mine, ironically, is that of the archetypal carnivore.  

These are not utterly fanciful notions.  I wonder how such possible factors may relate to certain other individual differences.  As you know, I'm interested in exercise physiology and a recently repeated BBC programme on exercise involved the doctor-presenter trying out a high intensity interval training schedule.  He felt better on it and vowed he'd keep it up.  However, in line with some marker tests that were carried out on him, the professor who offered to predict his exercise response actually correctly identified him as being at the extreme end of non-responders to the routine.   It turns out that even with as much hard work as the next man he is destined to be someone who shows absolutely negligible training effect.   It's much like the differences in capacity for weight control - some are genuinely much less lucky than others in their constitution and just can't get the same response to even the most heroic interventional attempts.  We will indubitably be talking a lot more, soon, about mitochondrial adaptation and insulin resistance.

On Weston Price, there's little doubt that his own work was important.  I'm one of those who believe that the site that bears his name has been hijacked by animal husbandry vested interests.  Chris Masterjohn's blog is one commended in that book I mentioned to you recently by an English doctor and called "The Diet Trap".  I haven't found time to more than glance at it so far.

As regards appropriateness of diets for healthy v sick people, we soon get into very deep water.  This is particularly the case in the fields of allergy and food sensitivity, which I've mentioned I always been interested in.  For example, it's staggering to see what is involved in terms of necessary exclusions of foods that are great for most of us when particular sensitivities are identified.  I'm sure you'll see what I mean if you ever venture into looking at low nickel-diets, low-chromium low-cobalt diets, low histamine diets, low amine diets, additive free diets and others with a scientific basis.

On Dr Terry Wahls, I do so hope that her enormous improvement is sustained - I'm sure you know how cruel a disease MS is with protracted periods of remission, doomed inevitably, it seems, to lead on to further periods of progression in an irreversible downward spiral. How greatt it will be if she's really broken that.   I keep meaning to replay, yet again, and take notes from her shorter video about the foods I should be buying (though actually our diet isn't desperately divergent from hers and the foods she advocates are mostly lifelong favourites of mine.

I confess I have yet to read The China Study, though I've read a bit by Minger and other rubbishers of it.  I'm inclined to be very circumspect about iconoclasts with their own, patent agendas but they need to be taken into account and evaluated, I agree.

I may beat you to 140 lbs the way it's going.  Not that I want to - I carried no surplus at 154 and need to determine whether my fairly sudden, marked, unintended loss is sinister or just due to stress and not eating enough recently.  Last night I scaled 143 but admittedly that was immediately after rowing nine miles and then soaking in a hot tub for a while.  I figure I'd better hit the weights seriously soon and bulk up again. 

Hoping to join the fray on the SP metabolic disease debate soon.

 

 

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