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Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 7/10/2014 11:07 PM (GMT -7)   
Please pardon the length of this post. I'm new to this board, but have been on the ileostomy board at this site before. In December, 2013, I had a routine physical where a urine test disclosed minute blood in my urine. A CT scan revealed a possible 15mm lesion on my right kidney that ultrasound didn't find a week later. A second CT scan a week after that (New Year's Eve) was supposed to be done as a multiphasic scan, but apparently the tech didn't do it right, so all it showed was the same results as the first scan. A urologic consult was suggested and I was fortunate enough that my insurance referred me to a wonderful doc at Stanford Medical Center. He said he wasn't convinced it was malignant and suggested a wait and see approach. I got a repeat scan earlier today at Stanford and my primary doctor just called saying the results show a very, very slow growing lesion in my right kidney (now 16mm, as it grew 1mm in seven months). So, it would appear I have renal cell carcinoma, but at a very early stage.

Questions for the group that I'll also be asking the Stanford urologist next Thursday when I see him:

1. Given that I have no other risk factors than being a 58 year old male (and I can't do much about that), how did I get this? No smoking, no drinking and no family history.

2. I know the gold standard of treatment is surgical removal. Given previous abdominal surgeries (and, hence, the ileostomy), can the surgery be done minimally invasive?

3. I also know there are non-invasive procedures such as cryo- or RF- ablation (freezing or cooking the lesion) that have very good success rates. Has anyone here had one of those procedures and, if so, how successful was it?

Are there any other questions I should be asking? Thanks for any information and suggestions you all might have. I've looked elsewhere on The net for data, but there's a ton of it and sometimes, it"s conflicting.

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 7/12/2014 12:40 AM (GMT -7)   
Hi Bay area Guy -

Sounds like your already fully engaged in your lesion/medical issues which is great, too many others seem to be overwhelmed and kinda sit back to let things take their course. And there is no such thing as overly long post as long as it's focused on the issues, so post away.

(1) Good question and I asked the same thing. I had renal cell carcinoma myself 12 years ago and wondered "why me?" - I'm healthy, exercised constantly, ate right, didn't smoke, had an occasional beer but that's it. Well, I was told "it just happens" so I concluded simply that someone has to get the short stick & it was my turn.

(2) My cancer was 12 year ago and the doctors are progressing nicely in many areas. But, wrt your other internal issues, talking to your surgeon and pressing them on their comfort levels should definitely be something to discuss. Certainly the type of procedure you choose and it's potential effectiveness will have an impact on this as well.

(3) This is the one I had problem with at the time so hopefully getting additional feedback from your doctors will help you with the final decision. I ultimately decided to go with surgical removal and things went very well, the resection was deemed clean and proved so over the past 12 years. I had recently lost a friend to breast cancer at the time and she had gone with a partial. So maybe I was spooked by this but my remaining kidney proved to be up to the task afterwards and worked perfectly.

Have they mentioned wanting to do a long-needle biopsy? If they are still unsure about the exact nature of your lesion, this may come up. I had it done and it wasn't as painless as they had led me to believe. Not trying to spook you but that was my experience. Also, everything inside of us tends to move around constantly, so targeting of the needle in the tumor was a battle and required several different routes. Ultimately they never did get a sample confirmation of the cancer due to this targeting issue but were still confident enough based on radiology to do the surgery. This proved to be the right decision and pathology confirmed "clear cell type" renal cell carcinoma.

Good luck and keep us posted!

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 7/12/2014 6:03 AM (GMT -7)   
Thanks for the reply bblbt. Yeah, I was thinking along the same lines regarding the whole short stick thing. I guess statistics just gotta be statistics.

about the long needle biopsy, my sister is a nurse practitioner. Granted, her area of expertise is child neurology, so it's a long way from the brain to the kidney. But she was a very good pediatric ICU nurse before that, so she knows her way around the body. She warned me against having a biopsy done. Her thought was that the kidney has tons of blood vessels in it and that makes it more likely that if there's any liquid component to the lesion, it could get transported to other parts of my body if it "leaks" during or after the biopsy. I'd certainly discuss this with the urologist before he does it, but that's getting ahead of myself.

Overall, while I'm hardly overjoyed at having this thing inside me, I think that the fact that it was discovered at such an early stage is actually a stroke of good luck for me.

Thanks again for the reply and we'll be keeping folks here up to date on what happens.

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 7/12/2014 6:46 AM (GMT -7)   
My bad, I should have mentioned the bad parts wrt the needle biopsy. But again, we don't know if they have it in mind yet and I just wanted to make you aware of the possibility.

Yes, they would have to be very careful due to the vascularity of the kidneys. But the bigger issue is cancer cell seeding due to the needle transport and the sampling itself. They usually use a cannula needle system to get to the region around the tumor. The cannula needle is larger than the actual sampling needle and remains in place after positioning. The sampling needles are then fed through the inside of it to actual get a sample from the tumor.

It's this very act that is a potential risk, although small (depends on the type of cancer, type of needle, etc). Imagine if, by taking a chunk of tissue, some very small portions (or even just a cell) happen to get loose and into the blood for transport throughout the body, well we now have a malignancy risk. Also, there maybe some cancer cells as residue left on the ends of the needles so that by simply retracting them back out of your body, you can also have needle tract seeding.

They try to minimize all this by using the cannula and by using aspirated-needles as well. But there is also going to be a risk that remains. It's a very tricky thing of balancing this risk against the knowledge that it may provide (I emphasize the "may" here, remember my case ...). Also, the bigger the diameter of the needles, the better the sample, the higher the risks ... all these things are up to your doctors and the hospital procedures wrt the risks they are willing to take on as well.

I have my own feelings on all this of course but I didn't want to scare you one way or another. Remember it's your decision to make, not your doctors, no matter how much they may want to do something. I would tell you if you want my opinion.

Yes, it is very fortuitous that they found it! And I know that feeling of "Get it out! Get it out now!!". Try and have a good weekend and good luck.

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 7/17/2014 1:31 PM (GMT -7)   
Hi bblbt. I had my follow up with the urologist today. He said that the results from the CT scan were inconclusive as to whether it grew. It sounds like the measurement is part science and part art. So, he feels it's best to continue to monitor. I go back in early November and he wants me to have an ultrasound rather than a CT this time in order to minimize my exposure to radiation. He reiterated what he had said at our first meeting regarding my psychological outlook . If I was uncomfortable with having something inside me that might be and might not be malignant, he could remove it either through a lapro or through cryo. But he feels it's still premature to reduce my kidney function. Overall, I feel comfortable with that approach. Thanks for your support!

bblbt
Regular Member


Date Joined May 2014
Total Posts : 184
   Posted 7/17/2014 3:37 PM (GMT -7)   
Glad to hear that he thinks things are stable and that waiting for another look is the next step. Makes sense given that the characterization is even inconclusive, and the size remaining stable further reduces the urgency. In my case, they knew immediately that it was cancer and they were proven right with pathology. So I think you can take some comfort in that (they certainly know when it is!) and waiting might not seem so bad.

Just one thing you might ask him. He's right about measuring the size and making comparisons - very tricky with the imaging data, kinda fuzzy & bumpy sometimes, I play with my own MRI data all the time. Given that the first ultrasound didn't even detect the tumor, should he do another one right now to use in comparing against in Nov when you have the second one done? Or, is he comfortable comparing the size of the tumor based on CT data (now) vs US data (Nov)? I'd be a little worried that the change in imaging methods alone can make things look a bit different.

Post Edited (bblbt) : 7/17/2014 4:47:09 PM (GMT-6)


Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 7/17/2014 4:30 PM (GMT -7)   
I asked that question and he was comfortable. I think it may have something to do with Stanford techs performing both the CT and the US. The previous scans in December were all done by a smaller hospital my primary care physician is associated with.

elykoj
Regular Member


Date Joined May 2014
Total Posts : 27
   Posted 11/20/2014 1:47 PM (GMT -7)   
In March i had a CT scan due to a leak in my jpouch which gave me a spinal infection. I had to go back to a loop ileostomy. In my scan report it stated I had a 8mm indeterminate hyperdense lesion on my rt kidney. Nobody said a darn word. a few weeks later i questioned my colorectal surgeon and he didnt seem too concerned but agreed to send info to his urologist colleague. a few days later i was told to wait till October and get another CT scan to compare films. which I did, still inconclusive but it now measured 1cm. Urologist suggested to get an MRI now to get a good look at it. Which I did. Though my colorectal surgeon I was told to just observe it at this point and get scanned again in 6 months, but in the meantime to schedule an appt with this Urologist, which i did. Had appt this past monday. Did urine sample and found trace amount of blood in urine. He wants me in 2 weeks to come to offfice and do a Cystoscopy and determine where blood is coming from. He stated 80% of the time its nothing. I also need to get another CT Scan tomorrow called a CT Urogram. We also talked about cryoablation a bit. He stated i would be a good candidate if needed to do something but lets get scan and scope done first. 3 CT scans in 10 months scares me. Not to mention, since 2008 I have had several due to intestinal issues. Nothing was said yet about possible needle biopsy, which scares me as well. Glad it got caught early though , just in case.. still scared though

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 12/11/2014 4:34 AM (GMT -7)   
Hi elykoj. Sorry to hear of your issues, both recent and in the past with your intestines. Sounds a lot like me, although I only had to endure a temporary ileostomy for about 2-1/2 months unlike your jpouch. In looking back at my old intestinal CT scan reports, some mention was made about my lesion, and, like you, no one told me about it. Mine was rediscovered after a routine urine test disclosed microscopic traces of blood. The urologist I was referred to wants, like yours, to take things slow and only take cutting or ablation action if he's 100% convinced it is malignant. My latest ultrasound didn't find anything there, so he's figuring it's either at a weird angle or a miracle happened. LOL. I told him my vote was for the miracle.

The urologist's main concern in all this is that he not take precipitous action which results in a permanent loss of kidney function. So, he said that unless I was psychologically suffering from the thought of a potential cancer growing in me, he preferred to monitor.

Also like you, he said there were plenty of alternatives to a full out surgery to remove the entire kidney. My doc is an Associate Professor at Stanford and one of his areas of interest is minimally invasive techniques to take care of these kinds of things, so cryoblation is definitely up his alley.

Not to sound too corny, but when I looked up the procedure, it seemed pretty cool (meaning slick). I go back for another scan by the middle of May.

Keep up your good spirits. There's reason to be concerned, but I think not much reason to be worried or scared.

elykoj
Regular Member


Date Joined May 2014
Total Posts : 27
   Posted 12/11/2014 5:39 AM (GMT -7)   
I have colostomy next week, another CT Urugram and he's pretty confident it's cancerous. We will discuss the cryoablation at that point. Nothing showed in bladder but said alot of stuff won't show up in bladder on CT and that's why he still wants to do the cystoscopy regarding the microscopic blood in urine. He said because of position of kidney tumor position, he does not feel the blood could be coming from there.. We will see

Bay Area Guy
Regular Member


Date Joined Jul 2010
Total Posts : 296
   Posted 12/12/2014 12:47 AM (GMT -7)   
Please keep us informed. All my best wishes for you.
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