Trying to find out the odds of getting cancer in the other kidney

dhs1963
dhs1963 Member Posts: 513
in Kidney Cancer #1
Six weeks ago, my right kidney was removed with a 6 cm Stage 1B grade 4 RCC. I am convinced that for me, the cancer is genetic, as my father had RCC, and his dad died of RCC.

As all of the genetic markers have not been identified, the genetic testing I have had may or may not give insight into the gene.

My concern is multifaceted: I am relatively young (48). I now have one kidney. What are the odds of another RCC developing, but in my left kidney? My understanding is the way the genetic mutations work, they limit the suppression of the formation of the cancer, so I should be at heightened risk for a tumor in the left kidney. My urological surgeon says that I am not at heightened risk for a new cancer in the other kidney. I say BS. I spoke with a genetic counselor, but she did not really understand the issues with RCC, as it is rare.
Does anyone know anyone that can help me? Also, is there anyone out there in the US that specializes in genetic RCC?

I am also concerned about my daughter. She is 10, and I would like to find out if she is at heightened risk for RCC.

I do not want to lose my other kidney, as I do not want dialysis.

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Not very high,
    dhs1963,

    My doctor says the odds are about 2% of RCC in the other kidney. Not very high, but higher than the general population. With yearly screening if this occurs they can use one of the new techniques such as RFA and Cybolation on the little bugger before it gets larger.


    Icemantoo
  • Limelife50
    Limelife50 Member Posts: 476
    #3
    Lucky me
    i got it in the other kidney
  • growler9
    growler9 Member Posts: 48
    #4
    Lucky me 2
    I had bilateral RCC at Dx. Both open partials. Lost 30% of left, 5.5cm stage 3b grade 3 and 20% of right, 2.5cm stage 1a grade 2.

    No history of cancer either side of family. One year out and clean so far. Consider myself cured. If in the future it pops up again, being checked every six months, it should be an easy fix.

    It's better to worry about stuff like crossing the street than something that hasn't and most likely will not happen. (My 2 cents.)

    Glad your cancer free and hope it stays that way! Alan
  • vittoria01
    vittoria01 Member Posts: 23
    #5
    Cancer genetic
    Dhs 1963,I suggest you contact the NHI of Bethesda.
  • robert_douglas_smith
    robert_douglas_smith Member Posts: 82
    #6
    On Tuesday Oct. 25th 2011 I went into the Rockdale hospital and had laproscopic nephrectomy surgery of my left kidney. My Urologist thinks all of mass was contained in kidney. The type of cancer is multifocal chromophobe renal cell carcinoma. My first post op cat scan was clear, the second 3 months later showed a 2 cm. mass on my right kidney. My urologist referred me to the radiology department at St. Joseph’s Hospital in Atlanta for a Cryoablation procedure on the mass. On May 16th Dr. Krebs ( my Interventual Radiologist) froze a 2.7cm. tumor. June 29th follow-up visit at St. Josephs Hospital was with mixed feelings. The CAT scan confirmed the Cryoablation (freezing) of the tumor last month was successful, it is gone!! But the CAT scan also showed 2 more masses that are approximately 1 cm each. I had my second Cryoablation procedure Friday July 20th. My last ct showed where the first procedure killed the mass but it still shows up on x-ray. The two treated were less than a cm or less each. The way Dr. Krebs explained it to me was the cryo (freezing) only destroys .5mm of live kidney tissue outside of the tumor. With only the one kidney at this point I am very pleased with the treatment.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #7
    robert_douglas_smith said:

    On Tuesday Oct. 25th 2011 I went into the Rockdale hospital and had laproscopic nephrectomy surgery of my left kidney. My Urologist thinks all of mass was contained in kidney. The type of cancer is multifocal chromophobe renal cell carcinoma. My first post op cat scan was clear, the second 3 months later showed a 2 cm. mass on my right kidney. My urologist referred me to the radiology department at St. Joseph’s Hospital in Atlanta for a Cryoablation procedure on the mass. On May 16th Dr. Krebs ( my Interventual Radiologist) froze a 2.7cm. tumor. June 29th follow-up visit at St. Josephs Hospital was with mixed feelings. The CAT scan confirmed the Cryoablation (freezing) of the tumor last month was successful, it is gone!! But the CAT scan also showed 2 more masses that are approximately 1 cm each. I had my second Cryoablation procedure Friday July 20th. My last ct showed where the first procedure killed the mass but it still shows up on x-ray. The two treated were less than a cm or less each. The way Dr. Krebs explained it to me was the cryo (freezing) only destroys .5mm of live kidney tissue outside of the tumor. With only the one kidney at this point I am very pleased with the treatment.

    Bilateral RCC
    What does your path report show your tumour histology to be? Unless it's multifocal chromophobe, like Doug's, it's unlikely that you'll get it on the other side too, although Mike - Limelife50 - did and he's clear cell but, as he says, he's just lucky :(

    A minority of instances of RCC are genetic - they're mostly environmentally caused. It could be sheer coincidence that your Father and Grandfather had RCC but it's also possible that you were all exposed to some conditions that predisposed you to this disease.

    You can't change your genetic legacy (though, in future, that may prove to be too strong a statement) so, as regards your Daughter, the best course is to see that she has a healthy lifestyle but not to worry her with probably unnecessary thoughts. You'll know what to look out for in terms of symptoms and, when she's a lot older she might want to get a scan just to be on the safe side. (I'm only a layman so these are just my thoughts, not medically qualified guidance.)
  • Limelife50
    Limelife50 Member Posts: 476
    #8
    Texas_wedge said:

    Bilateral RCC
    What does your path report show your tumour histology to be? Unless it's multifocal chromophobe, like Doug's, it's unlikely that you'll get it on the other side too, although Mike - Limelife50 - did and he's clear cell but, as he says, he's just lucky :(

    A minority of instances of RCC are genetic - they're mostly environmentally caused. It could be sheer coincidence that your Father and Grandfather had RCC but it's also possible that you were all exposed to some conditions that predisposed you to this disease.

    You can't change your genetic legacy (though, in future, that may prove to be too strong a statement) so, as regards your Daughter, the best course is to see that she has a healthy lifestyle but not to worry her with probably unnecessary thoughts. You'll know what to look out for in terms of symptoms and, when she's a lot older she might want to get a scan just to be on the safe side. (I'm only a layman so these are just my thoughts, not medically qualified guidance.)

    Hi Texas Wedge
    Or should i call you Texas N.E.D,congrats on that last scan,keep em comin Texas since you have a heart as big as Texas and you are a huge asset to this board!!!!
  • GrahamL
    GrahamL Member Posts: 3
    #9
    The incidence of a kidney
    The incidence of a kidney cancer occurring in the remaining kidney is increasing as there are higher survival rates. There is a specific genetic condition called Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC) which is associated with some Papillary 2 and Collecting Duct RCC and is caused by mutations in the Fumarate Hydratase (FH) Gene. More information can be found on www.hlrccinfo.org .
    The NIH is the leading centre for this condition
    Best wishes
    Graham Lovitt HLRCC Family Alliance Vice Chair

Discussion Boards