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3 years out chromophobe recurrence?!?!?

Posts: 2
Joined: Mar 2015

I am three years out from stage 1 grade 2 chromophobe left kidney.  A partial nephrectomy was done and until Saturday all my scans have been clear.  On Saturday I went to the ER for pelvic pain, and they did a ct of abdomen and pelvis.  Pelvis was clear but abdomen showed the following.  Soft tissue density mass near adrenal gland measuring 3.5 x 2.6 cm.  They also mention my scar tissue from the partial nephrectomy, but this is mentioned in a separate part of the report from the mass.   It also says something about the mass being on my surgical clips or the other way around (I don't have the paper in front of me).  I am hoping this is just scar tissue or a cyst or something.  I had a scan 6 months ago and nothing was in it.  I have an appointment on 3/12 with an oncologist as the er doctor told me to call and get an appointment today regarding my scan results. 


The reason I went to the er was I have been having a lot of pain on my left side.  In my pelvis, leg, hip...they couldn't find anything and are trying a round of antibiotics to try and treat for potential diverticulitis,  but I have to follow up about that too.


Posts: 67
Joined: Jul 2013

  Do you have the results from the urologist where you had your last yearly scan?  Maybe the mass was seen then but not mentioned because it is of no importance. Did the emergency room dr. see your yearly scan? It is very unlikely that chromophobe stage 1 has spread.     Maybe someone else could answer these questions with more knowledge.

   Have you been seeing an oncologist, or a urologist? My son is three years out from chromophobe stage 1, we have never been referred to a oncologist.   

APny's picture
Posts: 1998
Joined: Mar 2014

Chromophobe is supposedly very slow growing so it's highly unlikely that it grew to this size since your last scan. I think if it was there last time they would have made a note of it, so while I'm no doctor, I think it's probably a cyst or scar tissue. I would think a chromophobe tumor would take a few years to get to be over 3 cm. But definitely discuss it with your doctor and have him/her compare it to your last scan results.

sblairc's picture
Posts: 586
Joined: Feb 2014

Hello and welcome. 

Regarding your mass: Something just doesn't seem to jive here. Renal cancer is certianly messed up, but a tumor that large so soon after a scan, growing around surgical clips sounds a bit odd.

I would get copies of every post surgery scan right away and read them to see if there was indeed something not mentioned to you since they wanted to "watch and wait." I know my husband got his results over the phone one time and they told him "all clear' WHICH HE WAS but I had questions about an unrelated anomaly they never mentioned that I didn't see until I read the report. It was nothing, but still I wanted an explaination for what the hell calcified lymph nodes in the lung were from!!! (virus, evidently how unusual). 


Long story short, read the old reports and don't stress too much. Phredswife posts on here and her husband was told he had a new tumor that turned out to be his pancreas tail!! Stranger things have certianly happened in this renal cancer journey. 


Best to you, keep us updated please. 

Posts: 2
Joined: Mar 2015

I worked at the hospital where I had my scans before so I always got the results in writing.   Always nothing.  I have a nodule they are watching in my thyroid as well (ultrasound every 6 months).  I will update as soon as I know more.  Thank you! :)

I am alive
Posts: 315
Joined: Jul 2012

You are doing the absolute right thing - going to an oncologist (hopefully one who specializes in RCC) and checking out this mass. It might be scar tissue. You will find out. Try to stay calm til you know. I have chromophobe and I just want to say here for the record that it doesn't always grow slow. A tumor could grow to 3cm in six months. So you have to always be vigilant. Never shrug your shoulders. You did the right thing going to the ER.I think from this point on you should be watched by an oncologist with RCC expertise because not many oncologists have up-to-date working information on chromophobe, a rare subtype. Oncologists tend to be more vigilant about this than the urologist who probably did the surgery. Wishing you all the best.

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