major-mechanism-driving-kidney-cancer-progression

I wonder what drugs would impact the production of this SPOP?  I was also surprised in the negative diagnosis of kidney cancer specifically after hematuria.   I have asked that question if hematuria was a harbinger of future metastaisis....and mostly I have been told no.  This article implied otherwise. 

Very interesting article. It's great they are identifying different potential pathways to attack RCC.

I also asked my urologist about Haematuria being a sign that my RCC was spreading due to concern about the delay between diagnosis and my operation. He advised that it wasn't a sign of spread but that it was only a function of where the tumour was located (assuming close to or growing into urine collection system). I don't remember reading that Haematuria was a sign of tumour metastasis although several calculators/nomogram survival results do decrease with localised symptoms.

I would imagine that things like stage, grade, local invasion, renal vein involvement among other factors would be more important prognostic indicators than Haematuria although I could be wrong on that not being an expert and all. Happy to be corrected!

To me the part of the article referncing Haematuria seems a little poorly worded or based on older information ie in the past tumours were not detected early and were only detected once symptoms started appearing which could be at late stages. I myself was at Stage 2a - not sure if this is considered late or early. I'm sure some people with stage 1 tumours surely have had haematuria if located close to the urine collection system.

This passage from the article "Approximately 30 percent of RCC patients in the U.S. have metastatic disease when first diagnosed and nearly half of the remaining 70 percent will develop metastases" seems wrong to me although I am hopeless at statistics. Is this how high recurrance rates are in the US?? I thought stage 1 and some stage 2 RCC's have reasonable long term survival rates..

APny said:

hematuria

" I'm sure some people with stage 1 tumours surely have had haematuria if located close to the urine collection system."

Yes, I had pure blood in my urine (which started this whole journey) and the surgeon who who removed my stage 1, 3.4 cm tumor said it was growing very close to the collecting duct and that's what caused the bleeding.

The problem with a lot of stats that you read on the internet, is that they are hopelessly dated.  I try to avoid looking at them because they just freak me out.  There have been some pretty major advancements in treatment of RCC just in the last few years that the stats have not caught up with. 

nsb748 said:

My mistake, I was just

My mistake, I was just reading responses before reading the article. 

Thats what happens when i multi-task. I miss out on some details. 

Still, that rate of metastasis occurence seems really high.  If that number is legit, hopefully they find a way to start knocking it down.

I think it is strange  to say that there are no good screening tests.  Couldn't they pretty reliably screen for RCC with ultrasound?  It is not as simple as a blood test, or urine test,  but it is pretty simple to do.  It is probably just a risk/reward dilemma for doctors and insurance companies.  More ultrasounds would lead to more false alarms, and more CT Scans, and ultimately, a lot more cost. 

Yeah, I keep thinking about my husband and wonder if some sort of "Cancer screening regimen" was given when he turned 40 would have caught it early. Lots of private companies do "full body scans" if you can afford to pay out of pocket. I still think about doing this and feel a certian level of guilt for not pushing my husband to get one years ago when I "had a feeling" cancer was in his future. 

BDS said:

Ultra Sounds

 

No, I am afraid it’s all about the money. The medical establishment talks about preventive medicine but the reality is quite different. Unless you absolutely demand it your doctor / urologist will not order a scan of your kidneys. From 2005 through 2012 I went to an urologist complaining of urinary problems. My urologist brushed off my concerns and said my problems were as due to a enlarge prostate.  I do not have a medical background; at age 45 I doubt I could spell renal cell carcinoma let alone know what it was. I was diagnosed with stage 4 renal cell carcinoma only after I urinated a lot of blood in May 2012.  My cancer should have been diagnosed back in 2005. A $280.00 ultra sound would have saved my life. I find it unconscionable that the standard of care does not require urologists to perform a base line scan of patients over the age of 40.   Sorry, if I am venting - BDS    

 

I had a discussion about this with my uncle, a retired oncologist. I asked why full body scans aren't done. It's evidently not just about the money (although that's part of it). Part of the reason they don't regularly do routine CT scans is that scans pick up a lot of incidental/minor and non-existent problems as well, that have to be investigated. So for the vast majority of people, scans end up requiring additional types of scans and biopsies, which are expensive, but yield no information (and in some cases, even unnecessary surgeries). It is a cost-benefit trade off for sure.

Now, you would think they might only investigate the really bad looking stuff. Perhaps an all-or-nothing approach isn't correct, but a middle-of-the-road approach where obviously bad looking stuff gets investigated. On the other hand, I could see the minor stuff which turns out to be major turning into a liability of being sued risk for the doctors....

I feel for you. Mine was also not investigated thoroughly and I went for 1 year without having a scan which I should have had the year before, but my symptoms went away before I could get to the doctor and so the doctor didn't do anything. It's frustrating.

Maybe 1 scan like you said at age 40 and another at age 45 (or one at 42 and another at 47...) might be a good idea.

Todd