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New Diagnosis ChRCC

Blessedgirl94's picture
Blessedgirl94
Posts: 10
Joined: Jun 2016

Hi everybody!  I have been reading these boards for over a month now, and your posts and encouragement have really been the only way I have made it through....

I am a 44 y/o active female with no known health issues except migraines.  On May 9th I was told that I had a mass on my right kidney 1.3 cm, and that it needed to be removed or it would become problematic.  Knowing now what I know..... I am on my knees grateful that they found it.

I freaked out.  I have 2 kids, husband, etc...  And not sure how this could happen to me.  Well, with all of your support (unknown to you) I am now 9 days past my partial R neph.  They took 10% of my kidney, clear margins, and God forbid I have an issue with my other kidney, I could survive with either one.

I had my Dr appt follow up today, and they confirmed chromophobe RCC, 1.3 cm, negative margins, no sarcoma, no lymph involvement.  Yet...I still am scared and paranoid at this point.....  Did they miss anything, etc, but I guess that is normal.  My Dr said to have follow up scans in 1 year.  

Does anyone know of a ChRCC specialist?  I would like to send my reports and pathology to someone else just to get a second opinion.  I had a great Dr, but maybe that would ease my mind a bit.

Thank you all for your posts, even if you don't know it, you are a tremendous help to those of us that are newly diagnosed, scared and initially feel this is a death sentence.  

 

 

 

icemantoo's picture
icemantoo
Posts: 3284
Joined: Jan 2010

Blessed,

 

Welcome to the club which no one in their right mind would volunteer to join. Sorry I can not help you with the subtype. Where was the picture taken? Logan's Pass?

 

 

Icemantoo

Blessedgirl94's picture
Blessedgirl94
Posts: 10
Joined: Jun 2016

Your comments have been extremely helpful to me.  

Pic taken in Squaw Valley, CA. 

Max57's picture
Max57
Posts: 168
Joined: Mar 2015

Ice said it all mine 2.2cm iam stage 1 grade2 am doing CT scan every 6 months this the protocol for Urology association for 2 years then once a year... The worse part done taken the monster out.... You going to be just fine yours even smaller than mine 

medic1971's picture
medic1971
Posts: 200
Joined: Sep 2015

A fellow Chromie!!!  Sorry you had to join the club.  

I too had Chromophobe.  I had two mass one was 2.2cm and the other was 0.8cm both in the right kidney.  I went to MD Anderson for treatment.  I had a right robotic partial nephrectomy.  I got to keep more than 95% of my kidney.  I just had my first follow-up CT and everything was clear! 

I too am 44 years old, I have a wife and two kids.  I'm an active person and I'm in good health.  I was where you were exactly one year ago and I'll be honest with you it's taken me about that long to feel better about my future.  It will get better, I promise.

Here is what I know about chromophobe.  It's rare like less than 3% of all kidney cancers.  When it comes to chromophobe grading doesn't matter.  Things like staging, sarcoid features and necrosis matter and it sounds like you got very lucky.  Chromophobe is an indolent type of cancer that means it's usually not aggressive.  Its typical growth rate is about 3 to 4 mm a year (1cm = 10mm).  There is a good chance you could had this for another 10 or 15 years before you ever knew anything about it.  

The fact that yours was only 1.3 cm is GOOD NEWS!!!  I put your risk of death from kidney cancer in the next 15 years is less than 1%

Second opinion, well my right kidney and I are partial to MD Anderson in Huston Texas.  (Did you see what I did there?  “Partial”; partial nephrectomy)    

When you have time watch this video.  It gave me a lot of comfort and still does for some strange reason.

https://www.youtube.com/watch?v=blUI-ZzcViE

We are here if you have any questions!

Jason

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I can't help you with a referral, but I'm happy for you that your little beast was caught early and gone.  My doc was awesome, I live in Illinois.  Last year he relocated to Colorado somewhere.  I miss him terribly, as he was SO competent.  He personally called me before he left the practice in Illinois to say he was leaving me in the equally competent hands of his associate, who I have not seen yet, but will soon.

Heal well and enjoy life.

Donna~

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