My report

APny said:

For me it's just an "x" and

For me it's just an "x" and the image won't show.

+1 APNY

sblairc said:

some good news

There was no mention of tumor necrosis OR sarcormotoid (spelling is probably wrong) which are two features that point to aggressiveness in tumors.

While you had a Stage 3 tumor, it's small so probably less far along in it's clinical stage and potentially less likely to have metastacised. This is my best interpretation ONLY AS AN AVID READER of journal articles BUT NOT A DOCTOR or an EXPERT in any way. 

My husband was the same stage as you, but with more "invasion" and with necrosis, but he's on a 6 month scan NOT a 3 month scan which I am very intrigued by since he would be "worse" than you. Did they say why 3 month scans (versus 6 month scans)?? 

I think you are in good shape to let go a little bit and relax! Hope you are feeling better each day. 

Hi Nana

I know that stage 3 can seem scary. Mine was stage 3 as well (although mine is renal cell). I had lymphovascular invasion and necrosis. I have been NED for 18 months now. So here's hoping we all are NED from here on in. Just continue with your follow ups.

Hugs

Jojo

Nana4life said:

more info

I looked into the sarcomatoid and tumor necrosis. It says sarcomatoid features: not present  and tumor necrosis: not present (prior biospy site changes present). On my biospy report it says no necrosis. not sure what it means by prior biopsy site changes present?  

I just saw doc last week for a quick moment because i got an appointment squeezed in because of some bad pain I was experiencing post op. Turns out it was muscle spasms from my over doing it. Any how I quickly asked for path report and he gave me a quick run down of it. So didnt get a whole lot of detail time with him. But he said he is most concerned with staging but "We're going to keep a close eye on you and scan you every 3 months" 

I am making an appointment with an urological oncologist at a large university here on the west coast that is an hour away from me and hoping to get a more detailed breakdown of my pathology report. I love my surgeon and he's very well known for kidney cancers and he's department head and has lots of fancy titles, but he's a very busy guy so as hard as he tries to help me understand much of what he says flies over my head.

Several other people have told me to get an outside opinion and now that this sucker is out of me I'm going to find out what that hell it is and how the heck can I keep it from ever coming back. 

You guys have been the most helpful thus far. Thank you for your kindness! How is your husband f@ck caner? He is one lucky guy to have you doing alll this for him. It takes a lot of time and energy to research alll this crap. I am so inspired by you that I am going to try to get my husband on board with me. Two heads are better then one right?

Thank you

From your other post, I believe we had the same surgeon at UCI. At the time I was there (2 1/2 years ago), there was only 1 medical oncologist at UCI that had any experience with RCC, and his specialty was really melanoma. He was very busy and hard to get in to see. They had a new oncologist who had just started. I got an opinion from him, and I have to say it was just wrong. However, he's been there 2 years now and my oncologist at City of Hope said he's been working with him.

If you are in Southern California, we have terrific RCC specialists available. Dr. Figlin at Cedars is one of the doctors that worked on votrient, and one of the top guys in the country on RCC. His protege, Dr. Pal, at City of Hope is who I'm seeing right now. At USC, Dr. Quinn, head of the USC Keck School of Medicine, has done major research in RCC. There's also some guys at UCLA and UCSD, but those were a little far for me, and I saw no reason to travel that far with these guys available.

Personally, I wanted a medical oncologist following me. I believe Dr. Landman would do a good job, but I just wanted the guy that's going to treat me if it returns following me, instead of the guy that's probably going to pass me off to someone else following me.

Todd

Nana4life said:

more info

I looked into the sarcomatoid and tumor necrosis. It says sarcomatoid features: not present  and tumor necrosis: not present (prior biospy site changes present). On my biospy report it says no necrosis. not sure what it means by prior biopsy site changes present?  

I just saw doc last week for a quick moment because i got an appointment squeezed in because of some bad pain I was experiencing post op. Turns out it was muscle spasms from my over doing it. Any how I quickly asked for path report and he gave me a quick run down of it. So didnt get a whole lot of detail time with him. But he said he is most concerned with staging but "We're going to keep a close eye on you and scan you every 3 months" 

I am making an appointment with an urological oncologist at a large university here on the west coast that is an hour away from me and hoping to get a more detailed breakdown of my pathology report. I love my surgeon and he's very well known for kidney cancers and he's department head and has lots of fancy titles, but he's a very busy guy so as hard as he tries to help me understand much of what he says flies over my head.

Several other people have told me to get an outside opinion and now that this sucker is out of me I'm going to find out what that hell it is and how the heck can I keep it from ever coming back. 

You guys have been the most helpful thus far. Thank you for your kindness! How is your husband f@ck caner? He is one lucky guy to have you doing alll this for him. It takes a lot of time and energy to research alll this crap. I am so inspired by you that I am going to try to get my husband on board with me. Two heads are better then one right?

Thank you

So far, so good. As far as we know. Cautiously optimistic but realistic too. Honestly? Research helped me feel like I could take control over an uncontrolable situation. Knowledge is power. Please keep in touch here with any information you get on chromophobe. There isn't much out there but every day is one day closer to knowing what to do to treat those with chromophobe. 

Galrim said:

Not bad at all...

Even though it has grown into the fat surrounding the kidney it is still contained which is the most important part. Plus there is no mentioning of renal vein invasion. As for the prior biospy site changes present, ask your surgeon to be sure, but Im 99% sure its just a reference to the tissue changes derived from the biopsy. They always describe everything, even the harmless stuff...

/G

The perenephretic fat is outside the renal capsule.  If a tumor extends beyond the renal capsule it is no longer considered "contained" from what I understand. That's why it's part of the Stage 3. Extension beyond the renal capsule into the perinephretic fat is not considered a contained tumor. 

Galrim said:

Correct

when it comes to staging. But as a prognostic factor its quite important that it doesnt extend beyond gerotas fascia. Which I should have made more detailed in my answer. My bad. Sorry.

/G

Question.  Did you mention Grade of the tumor?

Contemporary medical knowledge of renal cell carcinoma dicates that GRADE for CHROMOPHOBE is not really relevant. 

I don't know why exactly. I just know that it is not important. Anyone that knows more, please add. 

Some places grade you anyways. My hospital did (for my husband). But a more knowledgable pathologist will omit the grade for chromophobe.