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Fuhrman Grade IS VERY IMPORTANT - even for small tumors

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I noticed another good discussion on this topic. When was last at the oncologist, I asked him to "re-tell" me some of the information he shared at an initial meeting - and I was finally in a place to process it.

He showed me a chart with 5-year survival rates for Kidney cancer. Yes, those with stage 1 tumors that are grade 1 or 2 do have a 95 or 99% 5-year surivival rate.

BUT, for those of use with small, stage 1 tumors that are grade 3 or 4, the 5-year survival rate drops to 65%.

I don't put this out there to scare folks, but to encourage those of us that had small, high-grade tumors to be especially vigilant in our follow-up care. It is not enough to say that surgery was our cure - be sure to see an oncologist and keep up the very close monitoring.

SushiSharon's picture
SushiSharon
Posts: 10
Joined: Jan 2012

Hi Minnesota Girl. I'm brand new to all of this, and am actually writing from the hospital, where I was admitted for pancreatitis/gastrtitis. Incidentally, an 8.4 cm mass was found on CT on my upper left kidney, touching my spleen. Can you tell me about this "Grade" and what I should expect? I will be seeing my urologist next week, followed laparoscopic nephrectomy in a few weeks.

rae_rae's picture
rae_rae
Posts: 277
Joined: Oct 2010

Sharon,

The Kidney Cancer Association has a great deal of information. Here is a link to get you started. Also while you are there, navigate through the website and find the We Have Kidney Cancer booklet and download it. I printed it off and saved it. GREAT information to get you started.

http://www.kidneycancer.org/knowledge/learn/about-kidney-cancer
This will let you know about staging, grading and different types of KC>

Rae

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Good info, MNGirl. You had your first set of scans/tests come back clean, we just have to pray for continued clear scans. Hugs!

Blessings,
Lisa

Limelife50's picture
Limelife50
Posts: 420
Joined: Nov 2011

I posted a discussion topic last week concerning both grade and stage of our tumors,as I mentioned at the time my intentions were not to scare anyone,I just kind of felt there were a lot of emphases being put on the size of the tumor,but I feel the grade of the tumor can at the time of our dx have an affect on our long term prognosis

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

I've noticed that the folks who brought up Fuhrman Grading system remarked about not intending to scare or alarm anyone. They shouldn't worry about that. All of us need to be realistic and as knowledgeable as possible. I for one, welcome any information about kidney cancer and the battle I am facing in the near and long term. Knowledge is power, as they say.

I've quoted below from the UCLA kidney cancer site. Here is the web page:
http://kidneycancer.ucla.edu/body.cfm?id=37

Note that in addition to staging and grading, excellent and poor health are also factors in the system.

"There are two common staging systems for RCC, the TNM [tumor-node-metastasis] System and the New University of California Los Angeles Integrated Staging System (UISS). The Fuhrman Grading System is a system used to describe how kidney tumors appear under the microscope.

"The New UCLA Integrated Staging System (UISS) is a more complex but probably more accurate system that incorporates the TNM staging systems, a person's overall health and the Fuhrman grade of the tumor.

"In the UISS system: Patients without any tumor spread are divided into three groups: low risk, intermediate risk and high risk.

"The Low Risk group is considered Stage I; are in excellent health other than the cancer and have a low Fuhrman grade tumor.
The Intermediate Risk group is all others, without any spread.
The High Risk group is either Stage III (but without lymph node spread), in poor health and have a high Fuhrman grade score; or Stage IV (without any spread, T4, N0, M0).
The five-year cancer-specific survival (only deaths from cancer) for the low risk group is 91%, for the intermediate risk group is 80%, and for the high risk group is 55%."

Mike

foxhd's picture
foxhd
Posts: 2057
Joined: Oct 2011

Gulp...Thank god for MDX-1106. I intend to impact those stats with a positive change.
I just changed the fluids in my Harley. I didn't do it for the next owner.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I didn't see attitude and spirit in the calculation, but I'm sure you have it and it counts for something!

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I just love your positive attitude!!! You are an inspiration. Please dont ever change :-)

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Mike - Thanks for your thoughtful response. I had not seen the UISS system, but it is good information to have. I agree - knowledge IS power. That's why we are here for each other!!

Michael6701
Posts: 26
Joined: Sep 2011

I had a 5cm tumor removed last June with an open partial nephrectomy. It was a papillary type cancer, Stage T1B, Fuhrman Grade III. Having read beforehand about the UCLA USIS grading system I specifically asked about it at my 1st follow-up. My UCSF Mount Zion surgeon said that it is not pertinent to my case. He just said that it was a fast growing, fast spreading cancer that he believes is totally removed. However, there could still be remaining undetected cells somewhere in my body and they will perform scans every 4-6 months to watch for any changes. Of course, I have 3 siblings that died of this same cancer in their early 50's (I am 67).

I wish now that I had asked him why the USIS was not pertinent to my cancer, but I was kind of overwhelmed with all the information being discussed with the surgeon and three associates present ( UCSF is a teaching hospital). It may be because of my family history.

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Hi Michael,

This stuff about Fuhrman grade and UISS and other staging systems is mostly all Greek to me (no offense to my Greek friends out there). When my urologist explained the pathology report, he seemed to skim over the Fuhrman system. When I asked about the Fuhrman Grade 2 on my next visit, he made an attempt to explain it but it went right over my head. He ended up telling me not to worry about it. Most of the stuff online regarding Fuhrman and UISS is not written for the layman. But based on what I have read, I'm guessing (note the word "guessing") that the reason the doctor told you that UISS does not apply in your case is because yours is papillary RCC and not clear cell RCC and he may be of the school that thinks the Fuhrman grade (which is used by the UISS) is not necessarily valid for papillary RCC. Again that's just a guess. If it is bothering you, you should definitely ask him about it. I'm in a big HMO and all of my doctors respond to emails. (I'm not crazy about some of my HMO's policies but I have to admit they do a pretty good job of getting back to me.)

Here is a quote from a web page I found:

"Although use of the Fuhrman grading system as a prognostic tool has been validated for clear cell renal carcinoma, its use for the other histologic subtypes (especially papillary and chromophobe) is a topic of debate."

Here's the web page if you're interested:
http://www.mdconsult.com/books/page.do?eid=4-u1.0-B978-1-4160-6193-9..10040-5--s0040&isbn=978-1-4160-6193-9&type=bookPage&from=content&uniqId=315914895-2

And there's plenty more technical stuff on the web that is just as confusing as that page.

Regards,
Mike

Michael6701
Posts: 26
Joined: Sep 2011

Mike, thanks for your comments. My cancer surgeon is actually very accessible. In fact, I can contact him via e-mail and receive an answer quicker than I can get a call back from his support staff.

I know that there is some debate re: papillary type cancers but my team of physicians at UCSF considered the Fuhrman Grade quite germane; it was the USIS that they dismissed for me (for reasons not clear to me). Part of the debate has to do with papillary Type 1 vs Type 2. As I understand it Type 1 is not quite as concerning as clear cell, whereas Type 2, which I have, is generally considered equally concerning as clear cell. I think part of the reason is that most Type 2 are Fuhrman Grade 3 or higher.

I will ask my doctor about his comment next time I see him, but only out of academic curiosity. I am not that concerned because the 5-year survival rates, as discussed above, are either 65% or 80%, so the survival odds are still pretty good as far as I'm concerned. And those are averages so I imagine for those of us blessed with good health coverage and are diligent in our follow-ups those survival numbers are even better. The average life expectancy for men born in 1944 was only 63.6 and I am already 67; so, even though I'm not at all ready to go, that 5 year projection would be far less worrisome for someone like me than for some of others on this site.

BG
Posts: 85
Joined: Jun 2011

Hey everyone,

From my research and according to my urologist, there does not appear to be a correlation in fuhrman grade and tumor agressivensess for chromophobe.

As more and more research is being carried out, there are several markers that are being used to try to determine more accurte prognostics as well as targeted thereapy potentials. Some of this is early stage.

What I am unsure of, if whether there is not a correlation between furhman grade for chromophobe or they just do not have enough data due to this rare subtype.

BG

keong72's picture
keong72
Posts: 10
Joined: Jan 2012

Hi BG,I am new member and my tumour also is chromophobe grade 2 size 6x5,can u give me some info about chromophobe tumour, I so worry about this tumour and very hard find info ,thank u,,,,,

Regards
keong72

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

Keong, the site below will give you some information about this rare form of cancer. Just above half way down the page there is a short note. Then, near the bottom there are references to papers with more information. I hope this helps. You are doing sensible things to help yourself and you will be in very good hands in Singapore. Good luck!

http://csn.cancer.org/comment/reply/234406/1191104

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

MNGirl is a valuable and well-informed contributor on this forum and I generally find myself in complete agreement with what she says. However, while appreciating that in starting this thread she had the best of intentions, I feel I must take issue with the statement in her subject line and the statistics she quotes. I think these are misleading and could be damaging to many readers. Let me explain why.

A positive attitude is crucial for all of us here and MNGirl is a staunch supporter of that view and has done much to promote it. A major, probably THE major, obstacle to maintaining that attitude is undue attention to the "statistics" , many of which are, for our purposes as individual patients, virtually meaningless (for reasons some of which I shall detail below) and an oncologist who flourishes 'survival charts' is an oncologist who doesn't know what he/she is doing.

For the vast majority of RCC patients, the principal prognostic factors are tumour size and, particularly, stage. Fuhrman grade is not of as much relevance. Even for the few that MNGirl has in mind, with small tumours and early stage but high grade, (and there are surely few stage 1 but grade 4 tumours?) it is questionable whether it often makes a practical difference to the actions of the patient or the treatment indicated. It does, however, give the patient yet another thing to worry about. This has just been illustrated by a newbie, Cool Breeze, who is a RN and yet still says "I'm freaked about the prognosis of grade 3." and "Now after reading all the posts on the furhman scale I have to say I'm frightened."

It's fine to exercise sensible caution and not be complacent about one's prognosis but for many patients that can easily tip over into a paranoid preoccupation with the statistics and consequent counter-productive anxiety and over-attention to every little ache and pain that might be 'important'. These threads attest to the emotional lability and vulnerability most of us have felt.

Mike made the sound comment that "Knowledge is power", a view I've also always taken. However, one must also remember the equally valid observation by Alexander Pope "A little learning is a dangerous thing; drink deep, or taste not the Pierian spring". The problem is that it's difficult to drink deep when there's not much there to drink - the knowledge landscape of RCC is still a fairly barren wasteland.

Advances in the medical world, for a combination of both good and bad reasons, take a long while to filter though to general acceptance. Luckily for us progress in cancer research is going on at a good pace. Nonetheless, particularly with the less common cancers we have only just scratched the surface so far.

The statistics and survival calculators based on them are essential for making scientific progress in epidemiology and R & D in developing new treatments. They are not of much value for us, as patients, though - for many reasons.

The first is that any familiarity with probability theory will tell you that you can't extrapolate from population statistics to individual cases in any way that is genuinely helpful for us. [If I believed otherwise, contemplating Bosniak grade 4, Fuhrman grade 4, T4, unknown lymph node involvement, unknown met. status, residual chromophobe now predominantly sarcomatoid (and it gets worse from there) I might just as well not bother to get out of bed tomorrow morning. BUT, in fact, I'll start my day with 18 holes of golf on frozen ground and be busy all day, reading, writing and researching.]

An analogy may help to illustrate the point. When the Belgian polymath Quetelet came up with the Quetelet Index in 1832 (now, due to Ancel Key, known to us as the Body Mass Index or BMI) it was of enormous value for population studies. However, It should never have been applied to individuals where, in various cases, it gives completely spurious results. Until there is widespread use of a better indicator though, it continues to be used with the imprimatur of the World Health Organisation as a measure of obesity for individuals (which it isn't).

Another point is that in this complex field no-one has a monopoly of expertise. We patients need not only 'plumbers' and 'electricians' (urologists, radiologists, oncologists etc) but researchers who are knowledgable about experimental design and sophisticated in statistical theory. No-one can cover all the bases. The result can be calculators devised by people who lack depth of medical knowledge, numbers emanating from medical sources unversed in the necromancy of the statisticians, and so on.

Even the best of survival calculator designers can't make a silk purse from a sow's ear. So much remains to be discovered. The TNM system has seen many refinements over recent years and more can be expected. With the rarer forms of RCC the data are too exiguous to permit of any reliable conclusions. 'The statistics' can't take proper account of an individual's condition (who can even guess what parameters are important - muscular strength, VO2 max. endurance, immune system robustness?). The putative improvement of prediction by the UISS classification is still, inevitably very crude. What are the relative weightings of different aspects of one's 'general health"? How does one know which co-morbidities may be of particular relevance? Very little is known for certain at the present time about the significance of different histological profiles, especially with the rarer forms. So much is still wide open.

Finally, it must be recognised that the 'survival' stats (which are expressed in terms of medians, not 'averages') are all based on data which are hopelessly out-of-date, typically involving cases dating back to years before all the new modalities of detection and treatment. Even the stats in the superb website of the late Steve Dunn (a treasure trove of information and still probably the best starting point for anyone concerned with kidney cancer) all pre-date the major recent advances in adjuvant therapy and the numerous clinical trials now under way.

Speaking personally, looking at "the statistics" I have less to be cheerful about than almost anyone else here but they don't weigh too heavily with me. I'm certainly not going to curl up in a corner and invite the inevitable. If RCC is due to get me it's going to have to go some if it's going to take me out before a wayward golf ball does the job!

MikeK703's picture
MikeK703
Posts: 235
Joined: Sep 2010

Tex,
I understand what you are saying. But there are people in this world who can't even utter the word "cancer," never mind contemplate projected survival rates. There will always be those of us who are interested in stuff like this and those of us who aren't. Me? I would rather know the worst and hope for the best. There's a lot of positive reinforcement here, and that's one of the purposes of this site and it's something we all need at times. But if we start censoring ourselves, even for a good reason like trying to keep everybody positive (an impossibility), it defeats another of this site's purposes -- to have a place to go to where we can learn something about kidney cancer. In the end, we are responsible for our own mental outlook and our reaction to what we read. Most of us are not in the medical field and everything said here should fall under that caveat and be taken with the proverbial grain of salt.
Regards,
Mike

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

Mike, I'm pretty sure that you and I have essentially the same views on all of this. We are among those who are keen to learn as much as we can. Most of us, however, come here for reassurance that what we are going through is not unique, to get some helpful advice on handling the practical problems and to enjoy the warm and fuzzy feelings engendered by knowing other folks are wishing us well and praying for us, and these are all equally legitimate reasons. You and I are among the minority who post links to real information on relevant topics - the very opposite of censorship. (I feel increasingly that this is a waste of time since most members aren't much concerned with learning more, just with feeling better and that's fair enough.)

The main point of my message was just to say that many here are damaged as a result of misunderstanding "the statistics" when they shouldn't be. The staging and grading systems are very important. It's clearly much better to be 30 with a tiny tumour that's stage 1 grade 2, than to be 70 with a large tumour that's stage 4 and grade 4.

The "survival statistics" are a different matter and do a lot of people a lot of harm. There's no censorship involved in adding further information by explaining why no-one should make the mistake (for all the reasons I gave) of thinking they can draw any valid conclusions about their personal prognosis from those statistics.

Best wishes,

TW

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

I have to say, the key message I wanted to emphasize was "to encourage those of us that had small, high-grade tumors to be especially vigilant in our follow-up care." The response I get from "the minority who post links to real information on relevant topics" is that my oncologist is a bad doctor - because he gave me information that I asked for??

Dozens of times on this site, others have stated "the survival rate for small tumors is 99%." That is NOT universally true and I've never seen it challenged. I would not want someone to become complacent because THAT statistic is misunderstood.

Michael6701
Posts: 26
Joined: Sep 2011

Minnesota Girl,

What you had to say originally on this topic was an excellent contribution for all the reasons you just stated. I began to participate in this site for information and real shared experiences, not for empty platitudes that would make me feel all "warm and fuzzy".

Michael

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

I do hope we can be permitted to have productive differences of opinion here. As I mentioned, I usually find myself in full agreement with your postings and I acknowledged and applauded your motives in creating this thread. I also endorsed the view that being complacent is unwise, which is why I said previously that personally 'I try to maintain my sense of Tumour'.

That said, you don't seem to have challenged the correctness of anything I have put forward and I adhere to the views I expressed. Doubtless your oncologist had the worthiest of motives in quoting very favourable odds to you at first meeting. When you invited him to revisit the topic, I trust he gave you what you asked for ALONG WITH a caveat not to make too much of the supposed "survival rates".

As I tried to explain, those stats have great value in epidemiology, r & d and in evaluating treatment options. HOWEVER, they are of negligible value in appraising odds for an individual patient for at least 3 reasons, viz. the inadmissibility of extrapolation from population stats to individual cases, the lack of appropriate granularity of the classificatory criteria and the fact that the data employed are hopelessly out-of-date and pre-date all of the recent advances in both detection and therapy.

If your deference to the "survival" stats is vindicated then at T4, stage4, grade 4 (Bosniak and Fuhrman), sarcomatoid etc, I won't be around much longer to trouble you with my postings. You may dismiss my disregard for those stats as wishful thinking to which I would reply that I always try to found my judgments on solid scientific grounds. Many medics (I would venture to say, from personal experience, most) do not have a very sophisticated understanding of statistics and do a lot of damage by quoting "survival rate" data that are virtually worthless to their patients.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

Tex / MNGirl / Others - I found the conversation interesting, exhausting, and confusing between all that has been written. We all have different personalities, and we come here for different reasons, some to learn, some to share, some to find comfort, and some to give comfort. I.e. there is no absolute truth, which takes me to a buddhist tenet, there is no objective reality, and reality is formed between the object and the subject, truth only exists in perception ?

Tex - you wrote in your subject line "Fuhrman Grade IS VERY IMPORTANT - even for small tumors" and then you went on to write, as follows - "For the vast majority of RCC patients, the principal prognostic factors are tumour size and, particularly, stage. Fuhrman grade is not of as much relevance."

I exchanged emails with a surgeon in Wisconsin, who writes to me, "Nomograms and each of their components are "blunt tools" which perform well on populations but are not very helpful in individuals with more rare situations because they don't have enough numbers to predict those situations."

More personally - I quote "Most tumors which invade the renal vein are large and these patients are at higher risk for progression. If you click on the methodology or source portion of the first nomogram you will find a link to a paper with ~700 patients. Very few of them likely had your situation. In the largest paper of this type reporting outcomes, only 26/1215 (2.4%) of patients had renal vein invasion with a tumor less than 4cm. Furthermore, you are young and healthy, which is also uncommon in this population (mean age in 60s). Nomograms are not good at predicting rare situations, like yours. "

The people who have given me numbers seem very attached to their own ideas, studies, and what they put in their papers, so much so they do not wish to re-visit or question themselves, which does not serve the individual person who benefits from their studies.

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

There is a good deal of information above, relating to some important topics and a few key points to recognise - not to be complacent with this very sneaky disease; not to make too much of the statistics; to appreciate that size and stage of tumours are much more important for prognosis than grade. On this last issue, the following statement from the UCLA Cancer Program summarises:

"Stages of Kidney Cancer

Although grading and the identification of cancer cell types help determine a patient's prognosis, most doctors believe that the most important factor in predicting prognosis, as well as the treatment options, is the "stage" of the cancer.

Staging is the process of gathering information from physical examinations and diagnostic tests to determine the size and location of the tumor and how widespread a cancer is."

Nonetheless, it is true that some (but fortunately very few) small tumours can have a very aggressive character such that they grow and metastasise rapidly. I've developed a particular interest in the subject just lately! In December I had a radical nephrectomy for a 9 cm. tumour, a few weeks after a clear CT scan had suggested it was 8 cm. My first follow-up CT on 29th February revealed a new tumour, not in evidence in late October, that had developed from being undetectable to 1 cm. in 4 months. By the time I had a second op a month ago, that new tumour had grown 16 times as large in the space of only 30 days!! Now, I'd call that fast - about 20 times as fast as the average!

There is little doubt that this is very unusual. In most cases small tumours are not a serious cause for worry, which is why it is now generally accepted that the best course for tumours smaller than 3 cm. is NO treatment but active surveillance (unless and until signs of change indicate the need to take action) and premature surgery is justifiably regarded as both unnecessary and irresponsible. So, I've been revisiting the topic and I've discovered a relevant paper from Korea which seems important and which I discuss below.

In this context I looked again at the information MNGirl was given by her oncologist. He showed her a chart apparently suggesting that the 5-year survival rate for patients with small, stage 1 tumours with grade 3 or 4 is only 65%. This, as MNGirl noted on 10th February, is in marked conflict with the information that iceman gives to newbies here to reassure them if they have small tumours - "Dozens of times on this site, others have stated the survival rate for small tumors is 99%."

I've not seen other posters challenging when iceman and others quote such figures and iceman isn't one to come up with duff information. Also, the figures MNGirl was given by her oncologist had struck me as alarmingly implausible. Having now explored again, I find that the survival rate he should have suggested for her was in the region of 95 -100% and a figure of 65% was simply ridiculous and completely out of kilter with all of the nomograms and calculators that one can consult online.

If you look at the Renal Cell Carcinoma Outcome Calculator produced by the Laboratory for Quantitative Medicine at Massachusetts General Hospital, you'll find that it takes account of all of the generally accepted criteria for prognosis.

Accordingly, the survival projection - of dying from cancer - for a 43 year old white female with a 2.5 cm. tumour, confined to the renal cortex, with no positive lymph nodes, clear cell histology and Fuhrman grade 3 is 94% AT 15 YEARS!!!!! The prediction at 5 years is 98%!!! After 5, and even after 15, years it's twice as likely that that lady would die of something other than cancer than that she'd die of cancer.

Still more interesting, is to vary the parameters. For the same lady, even at the worst Fuhrman grade of 4, the 5 year survival is 97%. Making it even worse still, by assuming sarcomatoid de-differentiation, the survival rate is still as high as 92%.

The factors that really impact her survival are TUMOUR SIZE AND SPREAD. The likelihood of dying from cancer, at 15 years, with clear cell, grade 3 and tumour size 2.5 cm. is 94%, with a 5 cm. tumour it falls to 88%, 10cm. tumour 77% and 15 cm. 67%. More dramatic still is the effect of spread - with more than 2 positive lymph nodes and tumour extension beyond the renal fascia the 15 year survival rate even for a tiny 2.5 cm. tumour is given as 3% !! [However, I doubt whether anyone ever has a 2.5 cm. tumour together with more than 2 positive lymph nodes and extension beyond the renal fascia.]

Although, for the reasons I've given earlier in this thread, you can't sensibly apply these predictive figures to individual cases, I hope this information offers some comfort to MNGirl and others who had, or have, small tumours with no mets, whatever their Fuhrman grade.

The 2010 Korean paper entitled "The Prognostic Factors for Patients with pT1a Renal Cell Carcinoma" throws a whole new light on small tumours. The bottom line is that size, stage and grade are not important for prognosis - what really matter are microvascular invasion and necrosis and these are the criteria which should guide subsequent monitoring and treatment plans.

djc2
Posts: 17
Joined: Nov 2011

One anecdotal case in process (mine, 62 year old male) of a small high grade tumor: I had a successful partial nephrectomy on Aug 16, 2011. Tiny, 1.8 cm tumor (stage 1), but agressive, grade 4 with 50% sarcomatoid features. Doc placed me on three month checks due to the grade. He just called (after my third CT scan and x-rays yesterday) to report still no evidence of disease and suggest we could go to 6 months checks now. I am a long way from five years but looking forward to positively impacting the five-year (not to mention fifteen-year!), small, but high grade survival statistic!

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

That is such good news. I am so happy for you. I go for my first scan in August. had stage 2 but only grade 1. Full kidney removal. My oncologist called for ct scans every 6 months but my urologist wants one every 3 months. I dont mind the extra watch :-) Good luck to you for many MANY more years and clean scans!! I wonder what the Renal Cell Carcinoma Outcome Calculator would say for me? Tex?

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

Judy, as I've said repeatedly, you can't meaningfully extrapolate from population stats to individual cases so in that respect the "calculators" are just so much crap.

However, for what it's worth, I punched in your personal parameters and it confirmed what we already knew - that your longevity is almost unaltered from what it would have been without the tumour that you formerly HAD. So all you need to do is look after yourself and those two lovely dogs of yours sensibly and all will be well. Your scan in August will doubtless cheer you up. [I'm due for my next follow-up scan (first since my virtually instantaneous recurrence) next week and I'm prepared for finding that the results won't cheer me up any but that's because my stage, grade, histology and necrosis status are not remotely as favourable as yours.]

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

I know I am blessed, Tex, And I know I should stop looking for reassurance. I am getting there. Its just taking me a while to go from "you have cancer" to "You are cured" It gets better for me every day. I am even getting back my enthusiasm for all the things I used to love to do. Getting my flowers planted, my pool put back up (took it down after the flood)and hopefully spending some time at the lake. I love it there. I really admire and respect you for the wonderful way you handle not only your own "C" dx but the way you try to help all the rest of us. You have made a definate impression on my life and I am hoping soon that I can help some of the newbies on here. Thank Tex :-)

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

[Duplicated - with about 40 on board too much contention?]

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

Great to hear how well you're getting it all back together Judy. I feel sure our mainstays here, Garry (iceman) and Gary will welcome your assistance in helping newcomers when you're well settled into your new 'normal' life.

We look out at a "lake" with an island in it, on the other side of the fairway which our garden borders, but it's really just a large pond. Is the lake you love a big one? Boating? Lakeside barbecues?

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garym
Posts: 1651
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I live on a lake as well, not uncommon in Michigan, but just one more similarity.

sunlover_56's picture
sunlover_56
Posts: 110
Joined: Apr 2012

You are more fortunate than I am, Gary, as I have to drive ab0ut an hour to get to the lake I love, but it is well worth it!!

Texas_wedge's picture
Texas_wedge
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This time Gary, yours is certainly larger than mine!

Jrow
Posts: 13
Joined: Nov 2011

Hi. I live in WI on Lake Michigan!

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sunlover_56
Posts: 110
Joined: Apr 2012

Yes Tex, The lake I love to go to is quite large. It is part of what they call the "Finger Lakes" in upstate NY. It is close to 50 miles long and at its widest, 2 miles. The Finger Lakes were formed many many years ago by glasiers. Lots of boating and BBQ'ing ect. Boating was one of my favorite things to do. Unfortunately we sold the boat when we got divorced. I will have another one someday though. Your home sounds absolutely gorgous. Flowers,fairways and a biig pond.. what more could one ask for, huh. I am kind of partial to .. errrrr.. dare I say.. England. Only because I have been there before. lol

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Texas_wedge
Posts: 2807
Joined: Nov 2011

Wow, now that's a serious drop of water (even if smaller than Gary's!). I believe upstate New York is a vast, incredibly beautiful, unspoilt wilderness - is that a fair description? It sounds like a perfect place in which to heal the soul. I've always loved 'messing about on the river' in racing eights, or a kayak, or just drifting along an English canal on a narrow boat or on a Scottish loch in a dinghy. Easier, there, to keep a sense of proportion about life's little trials and tribulations.

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garym
Posts: 1651
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djc,

Congrats on the continued good reports, you are so fortunate that you found it early. Here's hoping that 15 years is just the beginning!

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lbinmsp
Posts: 266
Joined: Jun 2006

statistics and research about RCC are still in the infant stage. Stats still say it is predominant in men over 55 - with defining factors of smoking and high blood pressure. We're now seeing more and more women and young men and women being diagnosed with this disease who do not have any of the 'expected' risk factors.

I was diagnosed in 2001 - following radical nephrectomy (with adrenal gland) pathology was
Stage 1, Grade 2, N0, M0 - 6.5 cm. in greatest diameter, no renal vein involvement. I was considered 'cured'.

Bottom line is - and again, in my opinion - followup is critical - regardless of tumor size or staging. Had my oncologist not been so diligent, my first recurrance could have been my last (it occurred 4.5 years after the original).

It seems to me that regardless of the current research or statistics, there seem to be no guarantees - no 'take it to the bank' statements about RCC.

LizB

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garym
Posts: 1651
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Hi lb,

It is your humble opinion that I for one find the most value in. The voice of experience that you bring to the table helps ward off complacency and reminds me to stay ever vigilant as time passes. When the doc told me at the 2 year mark that he really didn't need to see me again, I thought of you and told him I would rather keep testing for at least 5 years, he agreed.

How goes the current battle? Are you still tolerating the Sutent well? Any updates on its effectiveness?

Thanks for being here,

Gary

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Texas_wedge
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Joined: Nov 2011

djc2, as I recall your underlying histology was clear cell which is faster developing than chromophobe and goes some way to explaining how you got to 50% sarcomatoid at only 1.8 cm. tumour. I got to "predominantly" sarcomatoid at 9 cm. from originally chromophobe. However, i'm still amazed that you got to 50% at less than 2 cm. Has anyone ever explained how come you got such an aggressive histology while the tumour was still so small (a good case of 'the exception that proves the rule') ?

It's wonderful to hear how well you're doing and that we can expect to see you shift the stats in the right direction!

Perhaps your case illustrates how relatively unimportant Fuhrman grade is - you continue to show NED after being grade 4 but only stage 1, which (the stage) is what really mattered and augurs well for your long, healthy future.

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alice124
Posts: 881
Joined: Mar 2012

First ned is always the best - congratulations djc2.

I guess I inadvertently missed your earlier postings of stage 1/grade 4 dx and find myself staring at the screen. Isn't this extremely rare? Has your doctor ever given any background that could possibly explain such a small tumor but such a high grade?

Also, here's another question that probably everyone here knows the answer except me. Does a grade 4 ALWAYS have sarcomatoid features or is there grade 4 without sarcomatoid features?

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DMike
Posts: 241
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Alice,
I don't know for sure if a grade 4 always has sarcomatoid features but I'm stage T1b (5 cm) with Fuhrman grade 4. I have 5% sarcomatoid features. Like Minnesota Girl said in her first post here, I'm now in a mental place where I can ask a lot more questions than I could at my first visit, so that will be one of my questions in my first (6 month) scan visit in June.

The pathologist's comments for my 5cm tumor with 5% sarcomatoid:
"The tumor is predominantly clear cell with a Fuhrman nuclear grade 3/4. However there is a focal area with tumor cells exhibiting rhabdoid features in a myxochondroid background, thus warrant a Fuhrman nuclear grade 4/4. This case was reviewed in the Consultant's Conference on 12/9/11, with consensus as to the diagnosis."
--David

djc2
Posts: 17
Joined: Nov 2011

Dear Alice, Tex and others,
No one has explained my unusual presentation of such a small, yet agressively evolved tumor. Even for the clear cell subtype, even my surgeon, who is very experienced (many hundreds if not into the thousands of surgeries and chief of urology at Massachusetts General Hospital) has not seen it before. I searched for other examples and studies which contained conditions like mine, but could not find any this extreme. Consequently I have very little precedent by which to divine my future. I'm sure you can see why the debate about how significant grade is relative to stage and other factors is very interesting to me...But cancer makes us all aware of our uncertain futures, and I believe each of us has a unique manifestation and response to this disease. That is why reading your stories inspires me....one disease broken like light coming through the trees into so many faces...so many possibilities... When I think of my condition I try to focus on what I do know and can do. I'm still here. The Sun is out today. So far so good. I hope I can tell you for years to come that it is possible to have had an extremely agressive cancer and live a full long life. Best, Dean

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Texas_wedge
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Joined: Nov 2011

Even though you had a pygmy shrew of a tumour (small but very aggressive) your outlook is surely very good? Stage trumps grade every time. {Must have a think about the ramifications of my musing about the aetiology of primaries and 'recurrences' though, in this context.)

You must be well on the way to featuring in the text books Dean. They'll want you to write the accompanying text too, given your ability to provide information and be poetic in the same breath - I loved the concept of our fragmentary understanding of RCC as "broken like light coming through the trees"! You've certainly come through with convincing evidence of how rare your situation is. On the other hand, as you said, no two cases seem to be completely alike in this mysterious domain.

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Texas_wedge
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Joined: Nov 2011

Liz, I endorse what you say about no bankable statements being possible with 'the sneaky disease'.

Your experience, along with those of many others, makes me wonder whether you truly had a 'recurrence' or whether it was actually a new primary, arising from circulating tumour cells that didn't derive from the original tumour. Perhaps some of us have systems where the radar is down at a critical time, allowing a tumour to develop and this can happen again, years later, without any connection with the first tumour.

After all, with your first occurrence it happened spontaneously - no-one suggested it must have come from an undetected previous tumour (if they did, we'd be into an 'infinite' regress) so, logically, why assume that the second occurrence is directly related to the first? I would welcome any comments board members care to make on this bit of speculation!

I take the opportunity to join Gary in enquiring how you're getting on and to sincerely hope the answer is a cheering one.

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Texas_wedge
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Joined: Nov 2011

I may be mistaken David, but I believe that all sarcomatoid cases are classified as Fuhrman 4 but not all grade 4 cases have sarcomatoid (or rhabdoid) features. So, if I'm correct, the answer to Alice's question is: Yes, you can be grade 4 without sarcomatoid de-differentiation.

This may all change since the Fuhrman classification is widely regarded as past its sell by date, although it is still the standard grading accepted in the West at the present time.

In case it gets overlooked, may I repeat my request for comments on my speculation about 'recurrence' in my posting above under the heading "Vigilance"?

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lbinmsp
Posts: 266
Joined: Jun 2006

According to my oncologist, the radiation oncologist, and pathologist, as well as of what I've read - I've had 'recurrance' / metastasis from the primary tumor. All CT's were normal until the lung nodules appeared nearly 5 years after initial nephrectomy. This was surgically managed with removal of the right lower lobe of the lung but put me in Stage 4. The second recurrnace (current) occured again at about the 5 year mark, again defined as coming from the original tumor, this time to the pancreas.

Gary, TW - thanks for asking how I'm getting along. After stereotactic radiosurgery failed to produce any results, in fact, new tumor discovered in the liver, I moved on to Sutent. Managed 2.5 weeks on that before I found myself 'end up' - or down which is a better description - flat on my face on the floor. NOT my finest moment, let me tell you! I had been feeling great up until I started Sutent and on it I was sick beyond belief. I decided that quality of life meant more to me than quantity. I have now opted out of treatment, choosing LIFE instead - I've been traveling and playing and laughing and utterly enjoying every moment. My oncologist has stood with me in my decision and I do see him every 6 weeks. He loves my enthusiasm and has honored my decision. Except for some decrease in energy and some minor increase in pain, I'm doing fabulous! I intend to keep on playing and traveling and laughing and living life to the fullest - until I don't.

LizB

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Texas_wedge
Posts: 2807
Joined: Nov 2011

I suspect there are quite a few cases where the decision you've made is the correct one and such are life's mysteries that you might actually do better by living a full life than you would have by taking more treatment. How splendid that your oncologist is prepared to support you in your chosen course of action.

By the way Liz, I'm wanting to challenge the logic of the received wisdom on the matter of recurrence. It seems to me that an assumption is being made which may not always be defensible (BWDIK).

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lbinmsp
Posts: 266
Joined: Jun 2006

TW - are you asking whether the lung and pancreatic tumors are definitely RCC rather than a new primary (as in Pancreatic cancer and not RCC) - if so, I had biopsies of both and both revealed RCC. There is a paper that I read many moons ago about recurrances - it is from 2006, I think so there may be/probably is updated info available. I kept the link -

http://jco.ascopubs.org/content/24/19/3101.long

More recently I recall the all day RCC seminar that was shown online - one of the doctors was suggesting treatment for any patient who had a Grade 2 tumor. Wish I could have been there to ask why - I don't recall that there was an explanation given for that statement.

If I misunderstood your question - it certainly wouldn't be the first time.

LizB

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Texas_wedge
Posts: 2807
Joined: Nov 2011

[Liz, thanks for the tip about my communication deficiencies - I'll try harder to express myself more clearly.]

So that I don't forget, was the seminar you referred to the YouTube broadcast one of a few weeks ago from MDA? I did a bit of a digest of key points for my own benefit so if you can remember the doc in question I'll try to home in on it and check out the context.

Thanks for the link to that paper which, I notice, was produced by some big guns. It is, as you noted, from 2006 and so effectively pre-dates the new wave of targeted treatments but it contains a lot of valuable descriptive data. I notice that the opening sentence of the Introduction section vindicates the remark I made about stage trumping grade, viz.

"The prognosis for patients with renal cell carcinoma (RCC) is primarily dependent on disease stage."

The research reported in the paper follows on logically from earlier work of Robert Motzer but I'm struck by how crude the design (probably inescapably) is and how much in this unbelievably complex field, which, as you put it so succinctly, is "still in the infant stage" is fairly much finger in the air stuff. Even the finest minds (and there seem, thankfully, to be quite a few engaged in RCC research) are well-stretched by the challenges here.

On the recurrence issue, you've asked a useful question for clarifying what I'm saying. No, I'm not suggesting that the presumed 'recurrences' are lung cancer and pancreatic cancer rather than RCC. I would actually have predicted that they would have been instances of RCC. Some unlucky folks seem to get a number of different cancers but most of us, I believe, (subject to correction if mistaken in this) get only one form. (There are further assumptions implicit here that I'll pass over now but may advance in another posting.) Therefore, I would expect that any recurrences would be of the same nature as the earlier one.

My argument runs like this: For some reason your system dropped its guard and allowed development of a particular form of cancer at a particular site, namely your kidney. When that was diagnosed I presume no-one asked whether that instance originated from another earlier tumour-? It was just accepted that something went wrong (locally???) and you developed kidney cancer.

Now, just as our bodies harbour trillions of totally alien organisms in the way of bacteria and viruses, so we have mutant cells (native to our bodies but misbehaving) circulating all the time in our bloodstreams. Normally, those alien, or those native, entities are kept under control by our immune systems. I'm supposing that unknown causes result in a particular individual being vulnerable to losing control of a particular type of mutant cell and hence developing that particular form of cancer. We do know that sometimes people manifest a form of cancer that is usually associated with a different organ - e.g. displaying RCC in their lungs, even though they have 'never had' and 'do not have' RCC. This is regarded as the mysterious phenomenon of a 'secondary' tumour occurring as a recurrence of 'an unknown/undetected primary'.

My hypothesis is that that is an unwarranted and unnecessary assumption. The origin could well be in CTCs (circulating tumour cells) that happen, for some unknown reason, to have found a permanent residence in the lungs rather than in the kidney. This occurrence would be rare simply because that particular type of mutant normally finds the kidney the most hospitable abode and consequently is labelled as "renal cell carcinoma". If this line of thinking is correct, it will be necessary to eliminate the covert assumption built into the phrase "circulating tumour cells" and instead have CTC as standing for 'circulating tumourigenic cells' - thus detaching the observation of the CTCs from the implicit assumption that that they originate from a prior tumour.

So, in your case, the argument would be that your original tumour was disposed of and you were cured. However, because you are prone to losing control of a particular type of mutant cell, years later the same sort of mutant might take up residence in another organ which for some reason (maybe sheer chance) proved more hospitable at that juncture. Thus you have the mutant which has been labelled "RCC" expressed in your lungs or pancreas. To hedge my bets, i can reserve my position and say possibly both accounts are true - in some instances the CTCs originate in an earlier tumour and in others they don't.

I feel that this speculation perhaps chimes with some of the thinking put out by one of the luminaries of this field, the cancer doc David Agus, who, around 3 years ago, made this video (which I find fascinating and will doubtless view more than the twice I have so far):-

http://www.ted.com/talks/david_agus_a_new_strategy_in_the_war_on_cancer.html

Some of his concluding thoughts bear very directly on your recent decision regarding treatment and may interest you.

These guys have incredibly busy lives and yet the best still often manage to suffer fools gladly so i might even try to put the above to someone like Agus to see whether I've followed the implications of his thinking, at least in part.

foxhd's picture
foxhd
Posts: 2057
Joined: Oct 2011

God Bless you Liz. I like how you think.I hope to embrace your attitude. Fox.

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