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RCC Pathology Report

Kirby1831
Posts: 14
Joined: Mar 2018

Greetings Everyone!

I am new to the group and would like to share my story. Diagnosed with RCC(2 tumors) one tumor was Clear Cell Renal Cell Carcinoma and the second was Epithelioid Angiomyliopomas. I had Right Robotic Assist Partial Nephrectomy in Oct 2017. The Dr. said everything went well and he got all the cancer. About 2 weeks ago I begin to have really bad flank pain and got a little worried.  I looked at my pathology report in great detail and found the following statements that worry me.

MARGINS: INVOLVED BY INVASIVE CARCINOMA, RENAL PARENCHYMAL MARGIN

NOTE:  EPITHELIOID ANGIOMYLIPOMAS ARE CONSIDERED TO BE MALIGNANT NEOPLASMS WITH THE CAPACITY TO BE LOCALLY AGGRESSIVE AND MESTASTASIE. CLOSE CLINICAL FOLLOW UP IS RECOMMENDED.

Has anyone else had a pathology report like this?? I'm a little worried because everything I read online says involved margins means cancer is still in the body.  Can anyone share their experience PLEASEEEEEE????

CarlosRosado's picture
CarlosRosado
Posts: 83
Joined: Dec 2017

Do you have any follow up appoitment with your Urologist/Oncologists?

Kirby1831
Posts: 14
Joined: Mar 2018

Hi Carlos, my follow up is next week with a new Urologist since I have moved to another location.

Kirby1831
Posts: 14
Joined: Mar 2018

Hi iqugemiq, are you saying hurry to see a Dr?

Kirby1831
Posts: 14
Joined: Mar 2018

Saw this new Urologist and he stated positive margins is nothing to worry about.  However, he put me in for a CT scan on monday and a follow up with him the following monday 4/23.  He stated after that I will get a scan in 6 months then push it out to a year.  Now I'm not crazy about going to the Dr all the time but my pathology report said "close follow up is suggested"..  What do you guy/gals think???  I just don't want to wait a year only to go back and find out it came back and now at stage 4 or something.

JoeyZ's picture
JoeyZ
Posts: 205
Joined: Mar 2018

I think close follow up is a good idea. You'd rather keep on top of it than find something like stage 4, as you say. By all means, stay proactive and keep on it. The wording in these reports is enough to scare the life out of a person. Then use Dr. Google and you're even more terrified! 

I think if your scans are good that going to a year is ok. But if YOU'RE not ok with it, just tell him and maybe you can stay at 6 months scans for awhile. I don't see anything wrong with that. 

Hang in there!

Kirby1831
Posts: 14
Joined: Mar 2018

Thanks Zoey!  Yes I would rather be safe than sorry. I think I'm a little paranoid because I lost a classmate to RCC a few months ago. By the time he went back for his yealy scan it was too late.   I know we are all different but I just want to make sure I don't slip thru the cracks.

lobbyist0724's picture
lobbyist0724
Posts: 383
Joined: Sep 2016

My pathology report mentioned a close margin near the tumor bed. I sent it to do a re-test on the specimen just to confirm what it is. Perhaps you can redo the pathology report and ask to find out more detailed info about the margin if you are concern since the urologist is just scheduling the scans based on the report. So the report is crucial for the follow up plan. Questions you might want to ask such as is it grossly involved at the margin or just s small area with a microscopic margin and etc. Well, this is just my personal opinion.

Best wishes.

Kirby1831
Posts: 14
Joined: Mar 2018

Thanks!  I am going to request the close follow up as my surgeon said. Even if I have to make my appointments with him.  

stub1969's picture
stub1969
Posts: 792
Joined: Jul 2016

I, too, had microscopic positive margins on my tumor.  I called the surgeon right away and he really put me at ease, but I did ask for a more agressive scan schedule.  Under the circumstances, he agreed.  I'm almost two years out with 6 month scans.  At my next scan in May we'll discuss spreading those out to annual scans.  

I know exactly what you are feeling, so get your questions answered to the point that you feel some relief.  I'd push for 6 month scans for a couple years then reevaluate whether to spread them out.  Good luck!

Stub

Kirby1831
Posts: 14
Joined: Mar 2018

Hi stub!  Thanks!  I most definetly will and Good Luck to you in May!  I will post my results when I go back for my appt in 2 weeks.

APny's picture
APny
Posts: 1934
Joined: Mar 2014

I would definitely try to see a urologic or medical oncologist who has dealt with RCC.  Regular urologists don't necessarily have extensive experience with kidney cancer. Given the path report recommending close follow up I'd really want to have scans at least every six months for the first 3 years. I only went to yearly scans after 3 years. All the best to you!

Kirby1831
Posts: 14
Joined: Mar 2018

Thanks APny,  I did my 3d scan, chest x-ray and blood work last week.  I am going back for the results next week. I haven't slept a wink I am sooooo scared.  I just have that same feeling I did last time before I was told I had cancer.  Regardless of the results I know God is in control.  This site is wonderful and the people here are amazing!

APny's picture
APny
Posts: 1934
Joined: Mar 2014

I really get the anxiey. I'm hoping your results come back boring and uneventful. The stress over these tests totally sucks.

jason.2835's picture
jason.2835
Posts: 336
Joined: Nov 2014

Urologic surgeons love to tell you that everything is fine. If you haven’t set up with an oncologist specializing in RCC I suggest you do so as soon as possible. 

Kirby1831
Posts: 14
Joined: Mar 2018

Thank you Jason and I agree!  

Kirby1831
Posts: 14
Joined: Mar 2018

Jason,

Look what I just ran across as I was doing a little research. To give you a brief summary of my pathology report, I had 2 different types of tumors.  RCC and Epithelioid Angiomyolipoma. Never heard of the second and really never reserched it. But when I read my pathology report in detail I began to do a little digging.  I'm looking for a Oncologist now but  Look below......

 

CONCLUSION:

Unlike commonly benign classic angiomyolipoma, REA behaves aggressively. It is crucial for the clinician to be aware of and identify this epithelioid variant as a malignant disease. It should be carefully differentiated from RCC. Resection alone may not be curative, and adjuvant therapy should be considered. A multimodality treatment approach needs to be explored for this newly recognized malignant variant renal angiomyolipoma

 

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