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bilateral RCC

robinlouise's picture
robinlouise
Posts: 6
Joined: Jan 2008

My husband has been diagnosed with a 4 inch tumor on his left kidney and a 2 inch on the right. The surgeon is going to remove the left kidney and then try to remove the tumor and hopefully leave 2/3 of the right kidney. Has anyone out there had tumor on both kidneys. We would appreciate any info on this.

paul1
Posts: 2
Joined: Nov 2007

I have had a tumor removed from my left kidney on 11/12/07, I will have a tumor removed from my right kidney on 2/1/08. I live in the Louisville, KY area. My doctor is Dr. Andrew Novick at the the Cleveland Clinic, Cleveland, OH. I should still have two functioning kidneys. Dr. Novick pioneered this procedure and is a wonderful surgeon. Do you have a webpage? My webpage is paul1. I hope this helps and I would love to hear how things are going.

robinlouise's picture
robinlouise
Posts: 6
Joined: Jan 2008

I sent you an email not sure if it went through
my husband's surgeon will be DR .Stephens he is also seeing oncologist dr. rini. hope your surger went well. let me know how you are recovering
robin

onelesskidney
Posts: 2
Joined: Feb 2008

A friend of mine in his early 60's had a large tumor on his left kidney only to find out that he never had a right kidney which he was totally unaware of all his life. He had a consultation with Dr,s at Roswell Park Cancer Inst. in Bflo. N.Y. There recomendation was that he have a total left nephrectomy and be put on dialyisis. He went for a 2nd opinion to a hosp. in Pittsburgh PA., my friend went with there tx. option which was to remove the tumor from his left kidney and retain as much of the healthy portion of his kidney that was possible. This was 6 years ago and he is doing very well with only 2/3rds of a kidney.

robinlouise's picture
robinlouise
Posts: 6
Joined: Jan 2008

My husband had a partial nephrectomy on his left kidney in July 08 and a partial on the right August 08. The surgeries went well. He has a total of 1 kidney left and doing well. He has had 2 ct scans done since his last surgery and nothing has showed up. We are so thankful that he was able to have the partial's done. Just wanted to post to encourge anyone who might have the same problem with bilateral tumors.
Blessings to all who are dealing with RCC.
Robin

Happymom25's picture
Happymom25
Posts: 4
Joined: Jan 2013

I was diagnosed on Oct. 1, 2012 with 2 cm tumors, one on each kidney.  My Urologist diagnosed the left one as an Angiomyolipoma, he wasn't sure about the right tumor.  Early in December I had a partial nephrectomy and removed the right tumor.  It was stage 1a grade 3 clear cell RCC.  Now my urologist has recommended cryoablation for the left tumor.  At my follow-up the Dr. told me that it was a 70% chance of the left tumor also being RCC. 

I've become more concerned with the diagnosis because of how agressive it was.  I'm relieved that tumor has been removed but have concerns about the long term effectiveness of the cryoablation.  I'm 50 and other than the RCC diagnosis, have been in excellent health.  I've talked to my Dr. and he his attitude is, since the tumor has been removed, not to worry.  Am I just being overly paranoid?

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

Happy,

Having a tumor 2 cm or less is a blessing. Those removed 4cm or under rarely spread. Obviously having bilateral tumors makes things a little more difficukt, but at 2 cm you should be fine. 

As far as cybollaton it was developed after my surgery which was on 8.1.02 and was not named after me. Both my father and grandfather were in the retail ice business, hence I am an Iceman too.

Heres looking to a sucessful cybolation.

 

Icemantoo

Happymom25's picture
Happymom25
Posts: 4
Joined: Jan 2013

Thanks Icemantoo :-)   I appreciate the reassurance.  

 

Happymom25's picture
Happymom25
Posts: 4
Joined: Jan 2013

Thanks Icemantoo :-)   I appreciate the reassurance.  

 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

If any blood relatives have had RCC, it is possible that your cancer is genetic.  Unfortunately, most Dr's are not familiar with issues associated with familial RCC.  

jhsu's picture
jhsu
Posts: 78
Joined: Sep 2009
My RCC was diagnosed at age of 49 and my Mother’s was at her age of 90, two years after mine. It seems like more of an environmental than genetic problem.
dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

But there could be a genetic component.  The primary concern is, if it is genetic, you are more likely to get new, spontsinious tumors.  That can change the treatment strategy.  Try discussing it with your Dr.  Unfortunately, there are no specific guidelines.  

 

The jist of it is with non-genetic tumors, you want to get the tumor out before it spreads.  Same with genetic tumors, but you are more inclinded to way the damage to the kidney.

 

I am 49, and wish I had known some of this earlier (like when I was 42 and the tumor was probably small).

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

There have been a few members on this board who have had the misfortune of being dignosed with what you have been diagnosed with and i am one of them.What you have and i also have is referred to synchronous bilateral rcc which means we have been diagnosed with tumors in both kidneys within a 6 month period.More often than not this is not related to the rare genetic condition referred to as Von Hippel or in short VHL.If all you have is just those 2 tumors your long term survival is highly favorable.

Happymom25's picture
Happymom25
Posts: 4
Joined: Jan 2013

Thank you for the information.  The doctors have asked if others in my family have had RCC but I haven't been able to find any others.  No one has mentioned VHL though.  

The first tumor was removed on 12/6/12 and after much research I have decided to have the partial nephrectomy instead of the cyroablation.  I'll be having the surgery in early March.  The first was done with via DaVinci as will the next.  Both tumors are small and I feel very blessed that they were "accidently" discovered.

 

roaddr23's picture
roaddr23
Posts: 77
Joined: Jan 2013

I had a left nephrectomy in 2002. The tumor was 7-8cm and totally encapsulated thank goodness. My paternal grandmother also had RCC and a nephrectomy when she was about 50 yrs old. I was around the same age when I had mine. I am genealogy freak and happened to hook up with guy in her family line that still lived in the Allentown, Pa area the family came from. I asked him if he knew of anyone in that family up there that had ever had RCC. His reply was Yes, he had it when he was 36. He thought it might have been related to Vietnam

I now have 2 2cm tumors in my right kidney and am having a partial nephrectomy on Feb 8 robotically also. When I first spoke to the urologist about this new occurance and told him about the family history my daughter was with me and he advised her that she should consider being routinely checked because this did seem to be genetic...but no Von Hippel involvement.

 

dhs1963's picture
dhs1963
Posts: 373
Joined: May 2012

Contact nih.  They are the experts on genetic kidney cancer.  One f the protocols are different.  One theory is to leave as much of the kidney in place.  Call Lindsey Middleton from NIH.  She may be able to discuss some things further.  for example, my father, who at 74, has 12 masses across is kidneys, non greater than 2.5 cm, is being monitored.  If they take them out,he will be on dialysis.

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