Fuhrman Grade IS VERY IMPORTANT - even for small tumors

foxhd said:

luck of the draw
Gosh, that makes me think. Last year when I passed on the votrient trial, I was also thinking that it would be the last summer of my life. I wanted to enjoy it and did. I did not want to feel miserable heading to the end. What was the point? Liz, I think I have an idea where you are at. You are my hero. Love you Liz.
Fox

Thanks for the kind words but
I don't see myself as a hero. Most would say I'm crazy - and then - maybe I am. But I do know what I want and don't want - and I am truly at peace with my decision. It's been 9 months since this latest bump in the road was diagnosed and I'm doing great. As I've said before - God's driving this bus and I'm just along for the ride. I don't even have to navigate!

LizB

Canadian said:

RCC in my pancreas
Hi All,
I was 36 when I had my right kidney removed. 8 years later I had a tumor removed from my left kidney.
In March, I had a tumor removed from my pancreas. Each time I'm told I'm 'clinically cured' with surgery, cancer-free!
Follow-up is my concern because each time I'm quickly refers back to my family doctor. I have yet to be referred to an oncologist.
What exactly should I expect/ demand?
Kay

Cured
Your doctors are 'correct' when they say 'clinically cured'. What they're saying is - they've gotten all the tumor that they can see or can find. There is absolutely no way for them (or anyone else) to know whether there are some floater RCC cells just wandering around waiting to move in, unpack and hang pictures somewhere else!

Unless your insurance requires a referral, I would strongly suggest finding a good oncologist and have them take over your followup. It is imperative that you have regular and complete cancer checkups (CT scans / blood work) to keep a close eye on what's going on inside of you. You may also want to get a nephrologist since you've now had one kidney removed and surgery on the other.

Please let us know how you're doing - and prayers headed your way!

LizB

garym said:

Another thing in common...
I live on a lake as well, not uncommon in Michigan, but just one more similarity.

Another thing in common
Hi. I live in WI on Lake Michigan!

MikeK703 said:

Fuhrman Grade
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

Oncologist appointment Monday - questions to ask

I had a partial nephrectomy for renal clear cell carcinoma, 2.4cm fuhrmann grade 2, 2/15/11.   I am seeing oncologist Monday and am developing a list of questions for the appointment. I had uterine cancer surgery 10 weeks prior to kidney surgery. My health is compromised by chronic fatique and stress.

My brother just died from liver cancer and my other brother is stage 4 colon cancer (9 years on chemo) and I am the 7th of my birth family of 7 to have cancer. I want to be a strong advocate for myself and am fearful about kidney cancer prognosis. I have other stressors in my life and working on ways to find balance in my life.

I missed a scan August 2012 because the person who was supposed to set it up left UCSF.

I am trying to develop a list of questions for the Dr. ie; frequency of scans, other tests, etc???? I am curious about the UISS

 

Texas_wedge said:

Questions

First and foremost, I would think, is why haven't you been referred to NIH who would be extremely interested in your case and your whole family. I believe the first point of contact there should be Lindsay Middleton (Phone: 301-402-7911, I believe)

I did a matrix of family

I did a matrix of family cancer and met with a genetic counselor and there was no genetic correlations found. One possibility would have been Lynch Syndrome and they did a DNA test on my brother with colon cancer and found no connection with Lynch Syndrome or any other cancer snydrome. Remains a mystery why we have had every family member with some form of cancer.

What would be the benefit of contacting NIH?

Texas_wedge said:

Genetics v environmental hazards

Where do you live? Is it an extremely toxic environment? Are many forms of cancer common among the whole of the local population - your medical advisers must surely have some relevant data.  Unless there is some clear local factor (which I would guess your community would know about) then it seems to me inconceivable that you don't have a genetic problem.

What are the credentials and level of expertise of your genetic counsellor? I would be surprised if they are in the same league as the collective expertise at NIH.  Would it do any harm to supply them with an outline of your Family's history with cancer?  you already have your matrix available.  They wouls doubtless give you close attention and there are many trials conducted there.

Genetics

I grew up in San Francisco and the genetic counselor was from a teaching hospital, California Pacific Medical Center.  I can contact NIH, I was not familar with what they offer. What I am more concerned about now is what  I should be asking the onocologist  in relation to my prognosis at this point.

Fuhrman Grade?

Either my nephrologist didn't tell me about this or perhaps this is something new since 2000, but he never discussed a Fuhrman Grade with me.  To be honest all I know is that my tumor was a 5 cm, Stage I/II renal cell carcinoma, and that I had a right radical nephrectomy, and that the pathology report said margins clear or something like that.  Is this Fuhrman thing something I need to be concerned about twelve years after the fact?  I now live 2000 miles away from that whole thing but could probably track down my original nephrologist and/or path report if necessary.

Texas_wedge said:

Fuhrman Grade

Far from being new, Fuhrman grading is past its sell-by date.  It's still very much a standard, though, and will not be dropped for  a while yet.

It's important to know that it's really only applicable to clear-cell pathology.  It's totally useless for chromophobe RCC (where an appropriate replacement already has some currency) and it isn't helpful for papillary RCC either.

It should, perhaps, by now have been replaced by a much more practical measure developed in Glasgow and rooted in inflammation markers.

It would be no bad thing to have had a copy of your original path report but it's not obvious what utility it might have for you now, 12 or more years on.  The Fuhrman grade would be of less importance to you than knowing which sub-type of RCC you have - the odds are that yours would be clear-cell (it accounts for about 3/4 of all RCC cases)  because the sub-type has a direct bearing on the best form of treatment.

Fuhrman Grade...

Thanks, texas_wedge!

I used to have a hardcopy of my pathology report that I carried around with me (I travel a lot for archaeology) but at some point I decided to stop thinking about the RCC altogether so I just shredded it and moved on.  I guess I just didn't want to think about RCC for the rest of my life.  I can write to the hospital and nephrologist who performed my surgery though, and get another copy if necessary.

Jim

Texas_wedge said:

Fuhrman Grade IS VERY IMPORTANT - even for small tumors
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!

Kidney: Furhman 3 (2.6cm) Removed 4/19/18

I just joined and certainly want to learn more. TExas-wedge comment (7 years old) was extremely informative for me. I do want to learn more about the stats- particularly as the relate to the newer screening techniques and data being generated now. Thanks in advance.

S

foxhd said:

Fuhrman grade.
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.

Yes Fox!! Love the tenacity!!

Yes Fox!! Love the tenacity!!!!!!!! Out here enjoyin life xoxo