RCC Chromophobe

Scott_Flower-Mound_TX said:

Oncologist

NanoSecond,

The advice given to me by my Urologist/Surgeon in 2010 was that the successful partial nephrectomy is considered curative, based on the post-surgery findings.  No lymph nodes showed disease, and the CTs all appear normal.  The research I did in 2010 suggested that a post-op follow-up to an Oncologist for a T1b was not needed.  My surgeon seemed to concur, and said no further cancer therapies were called for, based on my post- op condition In 2010.

I am hoping the Scapula spot is inconsequential. Either way, I will let everyone know more once I learn more from the Scapula CT.  I will make sure an Oncologist or two weighs in on this test result as well.

Thanks so much for the feedback.  Most appreciated.

Regards,

Scott

duplicate

Fizziwiz said:

I should have kept reading....

Female, 47, May 2013, T1b, Histologic grade N/A (?), 7cm, right side, USA, Caucasian, B+, I have had a hysterectomy, tonsillectomy, and a bladder repair.  Now the r nephrectomy and l oopherectomy.  I am, nor have I ever been on systemic drugs.

I sure hope this helps, and that you will let us know any findings...

Thanks, 

Liz

Thanks Liz - your details are now in my db and further confirm one interesting trend.  I hope to manage to ingather more data via this thread as more chromies come on board, but we're rare, you know!

Fizziwiz said:

How rare?

How many are in the db? And can you tell me the ratio of men to women, for curiosity's sake.

 

Liz, I guess you can easily look up the stats in various places for general information e.g. here:  

http://www.cancer.gov/statistics/find  

Roughly, it looks this way - kidney cancer is one of the less frequent cancers.  Figures in the US and UK are fairly similar and for 2009, in the UK

Kidney cancer is the eighth most common cancer in the UK (2009), accounting for around 3% of all new cases. It is the sixth most common cancer among men in the UK (2009), accounting for more than 3% of all new cases of cancer in males. It is the ninth most common cancer among women in the UK (2009), responsible for more than 2% of all new cases of cancer in females.

In both the US and Europe, chromophobe RCC accounts for only about one in twenty cases of RCC.  So, on the above figures, You could reckon that chromophobe RCC would account for around 0.15% of cancer cases in men and 0.1% of cancer cases in women.  This needs to be tweaked just a little because although kidney cancer is more common in males than in females, chromophobe is a bit different - the incidence is more nearly equal between the genders.

Since chRCC is so rare, I'm quite pleased that I've now got 24 people in my db - drawn from the CSN and KIDNEY-ONC/Smart Patients forums.   Of those 15 are male and 9 female, which is actually more like the distribution seen across RCC in general.  It may be by sheer chance (or some sort of self-reporting bias) that so far all in my little db are Caucasian, except for one CSN member who lives in Malaysia and, not surprisingly, is Asian.  Apart from myself (a UK Celt) all the other 22 are in the US so it surprises me that those 22 don't include any Afro-Americans, Hispanics, Native Americans or Asian Americans, but this may not have any significance.  However, we do know, for example, that Afro-Americans seem more susceptible to papillary RCC so it's not impossible that my little sample is revealing a fact, rather than just a chance appearance.   I hope that larger numbers in the db will make this clearer.  The same goes for blood groups, where I don't have complete information but the distribution looks a little surprising so far, with fewer type 0 members than I would have expected, but, again, this may be just a chance occurrence and not reflecting reality.

What does intrigue me is that there seems to be a real gender difference in laterality - significant (after adding you in) at a level < 0.02.  It appears that males are much more likely to have left kidney cancer and females right kidney.   If this proves to be the case, I have no idea why (I had a theory but I have discounted it as probably invalid) but I do believe it would have to merit further investigation.

Fizziwiz said:

It didn't sit well.

After realizing that nobody will advocate for me like I will, I set up an appointment with my pcp. I informed him that I needed to have a referral to an oncologist and a nutritionist.  Done, and we had a good conversation.  He really thought that what I was asking for was responsible and smart.  I also asked for, and received, a cmp, and a CBC, neither of which has been done post-operatively.  I really want to know what my labs look like post-op, and think this will be a far more accurate baseline than before surgery.  ESP take a look with new eyes at my liver enzymes, knowing now that the liver is a chosen spot for chRCC!

Speaking up for myself felt good, and I feel like I got a little control for a little while.  A nice feeling!

As a nurse, I do a lot of education with patients, at the bedside.  My pcp had never heard of chRCC, so I got to do a little teaching again.  It was great to have an engaged student.  He assured me that he will know more about chRCC the next time we meet.

i don't doubt him, and that is also a good feeling, that there is someone willing to learn with me about this new part of my life.

thank you all floor being here, and I am glad to have this thread of chRCC people.

Liz

Cheering bit of narrative, Liz.  You've obviously got a good guy there in your pcp - I have a similar relationship with my GP (and my radiology and oncology teams) - I guess we're very lucky compared with many folks.  

If you and he come up with any interesting insights or new pieces of info, I hope you'll share them here.  Well done on your initiative and arming yourself with as much knowledge as possible.   The good docs favour this and only the authoritarians or those who feel threatened by well-informed patients baulk at it.

Texas_wedge said:

a few more questions

Jenn and Todd - a little knowledge is a dangerous thing.  So much about kidney cancer is speculation - we've only just started to scratch the surface in our understanding of it.  The "statistics"  are of no practical use to any individual patient.  Doctors aren't statisticians and most doctors don't have the slightest clue how to interpret stats.  

The received wisdom is that chRCC hardly ever metastasises but here we are with quite a few of us with mets.  We do seem to be the crew who are changing the numbers in quite a few ways - not entirely in good ways, maybe!  However, it's an open question what constitutes a 'metastasis'.  Some factor(s) predisposed us to get kc in the first place and if we get 'mets' twenty years on, after having been NvED in the interim, who's to say whether this is a 'recurrence' or just a new instance with strikingly similar cancer cell morphology. (There is the phenomenon of secondaries with occult primaries yet to be explained.)

Then again, there is a lot of difference between local and remote 'recurrences'.  Having only been dxed in Oct 2011, I may be in for unpleasant surprises down the line but so far no 'distant' mets have shown themselves.  I have a couple of compromised lymph nodes but these are very close to the original tumor site.  What I have had is 'recurrences' in several locations within just a few months of my nephrectomy.  However, these have all been very close in time and also close physically to the primary (a tumor close to my spine, removed with a second op, and one on my abdominal wall which is inoperable, plus the lymph nodes).  It's believed that the secondary tumors are not so much 'mets' as 'satellites' - leftovers from not being able to achieve clear margins in my nephrectomy.

All of these factors and many others go towards explaining why I'm still around and functional a year and a half on.  A few days ago someone on Smart Patients posted links to papers on sRCC which repeated the 'stats' which showed that with my histology (necrotic, sarcomatoid chRCC) the median survival time was around 4 months from dx - or 2 or 3 months from my nephrectomy.

Neil, I'm still alone in full detail of pathology but John (ourfriend), I hadn't realised, also has schRCC, though, thankfully with a small sarcomatoid component. 

I must also correct the false impression I seem to have given about my abilities as a golfer - I'm avid and used to play 5-10 rounds a week but without the payoff that should bring in skill, alas   [but then I was nearly 50 when I took the game up].  I played in a Carnoustie Club comp yesterday on the Championship Course and recorded a dreadful score, which I ascribed in part to having rowed 18,000m (11 1/4 miles) on Sunday.  Fortunately there's another excuse available - it was so windy that when we clocked our scores into the computer, of the 17 scores in, only one player had managed to break 90 (and he shot 88!) - I'm hoping it's confirmed as a 'reduction only' comp and won't contribute to the ineluctable upward drift of the old handicap.  (At least I can fall back on the excuse of having a new 'handicap'!)

I have been lookin around this website and decided to join.  I had a partial nephrectomy on June 4, 2013. Lab report came back T1a Choromophobe RCC.   Tumor size 1.2 cm.  Furman score N/A. Tumor on right kidney.  I am A 55 year old African American female.  Blood type A+.  I have a follow up with my urologist in July to see where we go from here. This is scary stuff!  

Texas_wedge said:

Database

To   Jenn,  swijak  and Keong  --  I'm compiling a database of profiles of chromophobe patients.  I have some details for each of you but would like to have the following for everyone:

Gender, age, month of diagnosis, stage, grade, size of tumor, side of tumor, your country of residence, ethnicity, blood group, surgeries and any systemic drugs you have had and are on now, if any.

I'd be grateful if you could supply those details. Chromophobe RCC is fairly rare but I have a dozen of us listed so far.

1966 rt oopherectomy ( teratoma..contained inside ovary and Fallopian tube...no treatment following surgery)

1974 left oopherectomy w/total abdominal hysterectomy ( teratoma...contained inside ovary and Fallopian tube..no treatment)

1986 bilateral breast bx (benign tissue removed)

1987 left breast bx (benign tissue removed)

1988 large mole with bridged margins removed from my back ... Benign pathology 

1997 two squamous cell carcinomas removed...middle finger right hand invasive...left ankle clear margins

1998 rt breast wire guided bx of tissue inside of microcalcifications

2012 left ulnar nerve relocated

2013 right radical nephrectomy ...chRCC ...no further trtreatment 

 No drug use,except BP meds and a little bit of anti- depressant and Tramadol as needed.

Now you know as much bout me as my dr does!  

Texas_wedge said:

Surgical history

Hmmm!  I suppose that with your history as a customer you'll have negotiated a good volume discount?

I think moderate use of anti-depressants and Tramadol shows admirable restraint!

Here's hoping you have much better luck in the years ahead.

Nope...I wish I could have.  My entire front of my body should be re-named "scar face"!

adman said:

Is Grade more important than Stage??

Somewhere on the list this has probably been discussed, but is Grade a more important factor than Stage when determining severity or reoccurance factors?  

Or is one just as important as the other, maybe even for different reasons? Or, is one just as important as the other, or is it an issue of the "totality" of the patholotheir what each mean to the other given the facts - individual criteria/ characteristics? 

 

M, I'm surprised you don't remember, having been a regular here for a long time now.  Yes, it's been discussed at great length but there will be plenty of newcomers who won't know and so it's worth running over it briefly yet again.

No, in fact Stage is very much more important than Grade for recurrence and life expectancy. In default of anything better, they are both very useful but Stage will outlast Grade as an indicator.  Grade is a very crude and subjective method of assessing cellular change by examining cells under the microscope.  It was developed by Fuhrman many years ago and is past its shelf life.  In particular, it's recognised that it's only a useful indicator for clear cell RCC and, in fact it's so useless for chromophobe that a new grading method has been mooted specially for chRCC  for use instead of Fuhrman grade.

Although Stage is far more significant, Grade adds some more predictive value, particularly at 3 and 4 values.  If the cells look grossly different this usually means the histological type is changing to "de-differentiated" sarcomatoid form which is very much more aggressive and betokens a much more dismal prognosis.

Differently based and much more sophisticated predictive measures will supplant stage and grade assessment before long, one hopes.  An example is the mGPS - the modified Glasgow Prognostic Score which can be easily calculated and can be done before nephrectomy (unlike grade assessment which is usually reported in one's path report following the op.)  A good brief overview can be found at:

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

It doesn't take much looking to find any number of descriptions of stage and grade.  This site contains a huge amount of info if you look around a bit, e.g. at

http://www.cancer.org/cancer/kidneycancer/detailedguide/kidney-cancer-adult-detection

which talks about detection, diagnosis and staging, and :

http://www.cancer.org/cancer/kidneycancer/detailedguide/kidney-cancer-adult-treating-by-stage

which describes how stage is used in choosing treatment methods.

THIS THREAD Died? 

Hi, Patty.  I'm a chromie, too.  A little over 5cm tumor on lower right kidney removed by partial August '16.  It's just an observation, but based on recent posts on this site, there seems to be more Chromophobe RCC patients than the 5% the literature talks about.   Glad all is going well with you!

Stub