Small Chromophobe Renal Cell Carcinoma

terrysanchez
terrysanchez Member Posts: 10
in Kidney Cancer #1

Hello,

This is my first time posting to this group.  I recently had surgery at MD Anderson after a biopsy revealed that I had Chromophobe Renal Cell Carcinoma.  I have read as much as I can about this type of cancer but still have questions.  I am wondering if others have had genetic testing for Birt-Hogg-Dube Syndrome.  Are the majority of these typees of cancers genetic?  I have my follow up on March 7th to discuss the pathology report.  My tumor was rather small at 1.5 cm, confined to the rifht kidney.  I was told that the recurrance is 5%.

 

Comments

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #2
    Chromiei

    welcome.. sorry you are here..

     not what you what but you get to join our rare group

    i was never asked about or offered genetic testing but as I have two children I will check it out... my surgery was in sept 17

     I was told majority was not genetic unless you had it at a young age(most reports talk about genetic components but not all herid)

     

     

    well as you find out there are statistics and there are statistics 

    average  small chromophobe is 5% but under 4cm most reports say 3%

    Hope you are ok

    Annie

  • terrysanchez
    terrysanchez Member Posts: 10
    edited January 2018 #3
    Wehavenotimeatall said:

    Chromiei

    welcome.. sorry you are here..

     not what you what but you get to join our rare group

    i was never asked about or offered genetic testing but as I have two children I will check it out... my surgery was in sept 17

     I was told majority was not genetic unless you had it at a young age(most reports talk about genetic components but not all herid)

     

     

    well as you find out there are statistics and there are statistics 

    average  small chromophobe is 5% but under 4cm most reports say 3%

    Hope you are ok

    Annie

    Thanks for your reply, Annie.

    Thanks for your reply, Annie.  I'm doing ok.  i'm just obssessing a little too much and should probably stay off the internet.   I am worried that the cancer will come back even though I have been told there is ony a small chance of that happening.  I will fell better (I hope) after genetic testing.   I am 54 and have not had any other signs of an inherited syndrome but still worry.  Hope you are doing ok, as well.

    Terry

  • repaid
    repaid Member Posts: 17
    #4
    Genetic testing

    Terrysanchez hi. I too have chromophobe rcc. I was tested in 2015  and came back positive for BHDS. Since then my sister and her son and daughter also came back positive. Found out it is on my fathers side of he family. He passed away from kidney cancer in 1977. My sisters  son also was diagnosed in 2015 and had just passed away  12/31/17.He aws only 37 yrs old. May he rest in peace.

  • Bay Area Guy
    Bay Area Guy Member Posts: 618 Member
    #5
    Chrome here as well.....1.7cm

    Chrome here as well.....1.7cm when removed.  I asked about genetic testing when I read the sources you probably read.  Both the urologic oncologist and the surgeon said no need to do it, perhaps because of my age at the time (60) and no kids.

    Good to hear you’re doing well.

  • stub1969
    stub1969 Member Posts: 966 Member
    edited January 2018 #6
    Chromie

    Welcome, fellow chromie.  I was 47 when my 5.3 cm tumor was found incidentally.  I had a partial in August '16 at Mayo in Rochester, Minnesota.  During my latest scans in December, one of the doctors on the surgical team brought up genetic testing.  I'll meet with my surgeon, Dr. Chow in May to see what he thinks about this.  I don't have any characteristics of BHDS, and no relatives with this type of cancer, so we'll see.  Good luck!

    Stub 

  • terrysanchez
    terrysanchez Member Posts: 10
    #7
    repaid said:

    Genetic testing

    Terrysanchez hi. I too have chromophobe rcc. I was tested in 2015  and came back positive for BHDS. Since then my sister and her son and daughter also came back positive. Found out it is on my fathers side of he family. He passed away from kidney cancer in 1977. My sisters  son also was diagnosed in 2015 and had just passed away  12/31/17.He aws only 37 yrs old. May he rest in peace.

    Thanks for sharing your story

    Thanks for sharing your story with me.  I hope you are doing well and have had no recurrence of renal cell carcinoma.  Can I ask if you had any of the other symptoms of BHD or was the kidney cancer the only symptom?  I wish you and your family all the best!

  • terrysanchez
    terrysanchez Member Posts: 10
    edited January 2018 #8
    Bay Area Guy said:

    Chrome here as well.....1.7cm

    Chrome here as well.....1.7cm when removed.  I asked about genetic testing when I read the sources you probably read.  Both the urologic oncologist and the surgeon said no need to do it, perhaps because of my age at the time (60) and no kids.

    Good to hear you’re doing well.

    Thank yoI for the information

    Thank yoI for the information!  Hope you are doing well now!

  • terrysanchez
    terrysanchez Member Posts: 10
    #9
    Thank you! best of luck to

    Thank you! best of luck to you too!

  • terrysanchez
    terrysanchez Member Posts: 10
    edited January 2018 #10
    Thank you! best of luck to

    Thank you! best of luck to you too!

  • medic1971
    medic1971 Member Posts: 225 Member
    #11
    We have much in common

    Hi Terry,

    I too had a surgery at MD Anderson to remove two small renal masses.  One was 2.2cm and the other was only 8mm.  Both of which were chromophobe.  Dr. Karam was able remove both tumors and I kept over 95% of my right kidney.  That was back in 2015.  In November of 2017 I finally went back down to MD Anderson for genetic counseling.  (I meant to go sooner, but life kept getting in the way).  I had 23 different tests ran only a handful of those tests were for kidney cancer.  The rest were done for breast and ovarian cancers.  The reason they tested me for the latter is because those types of cancers run strong in my family and the fact that I have a daughter.  I am happy to report that everything came back clean.  The cost of all that genetic testing was less than a $100.  Here's the only catch, if you do decide to have that testing done it takes about 6 months to get an appointment.  The test results took about a week to come back.   

    Any questions please feel free to ask.

  • repaid
    repaid Member Posts: 17
    edited January 2018 #12
    terrysanchez said:

    Thanks for sharing your story

    Thanks for sharing your story with me.  I hope you are doing well and have had no recurrence of renal cell carcinoma.  Can I ask if you had any of the other symptoms of BHD or was the kidney cancer the only symptom?  I wish you and your family all the best!

    early signs

    I had the testing done to let the DRs  know what to look for  should a loved  one have some sort of signs early on. I have a lot of different DRs , and have had to educate them on BHDS ,as most have never heard of it. I myself still have chromophobe rcc. Was to have my MRI scans done on Friday but there  was a problem in radiology, so am waiting for a call when they can reschedule . My best to you.

  • ribauerl
    ribauerl Member Posts: 1
    edited January 2018 #13
    I'm a Chromie too

    I was 37 when I was dx'd with kidney cancer.  I was told the same thing; that it had a 5% chance to come back.  Mine was 1.5 cm or the size of a nickel.  They found it completely by accident.  Since I have colitis they wanted to do a CT scan looking for scar tissue in my colon when they found it.  Since then I've had two CT scans and many chest Xrays.  My dad's mom had kidney cancer as well.  Her's was the size of a grapefruit and had already metastasized to her lungs and brain when they discovered it and 9 months later she passed away.

    I am an ex smoker.  I'd quit a few years before they found it, but it dind't make me feel any better about it.  When I asked what caused it, without flinching, the Dr immediately shot back that it was caused by obesity and it certainly could be since I'm about 100 pounds overweight and have been most of my adult life.  

    I've also had many issues with hernias and colitis, but my primary question/complaint is that I think about it every day and I can't quit.  If I have a headache I immediately think I have a brain tumor.  If I have any kind of abdominal pain I immediately think I'm full of cancer, etc.  I've had panic attacks for years, but now the panic attacks have morphed into this hypochondriac-ism problem.  

    I take Ativan when I have those irrational thoughts, but I don't take anything else as far as anti-depressant/anti-psychotic, etc because of the side effects.  I'm sure I'm not alone in this, but I'm wondering how everyone else copes after hearing they have a malignancy?

    I havent had the genetic testing as I'm scared to death of the results!  My grandmothers both had cancer during their lives and since my one grandmother died from kidney cancer I probably have a higher than average probability of carrying the gene.  

    Richard.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #14
    Hi. Glad you found us and are

    Hi. Glad you found us and are reaching out. I did not have the same type of kidney cancer but am going for genetic testing in July. There was a large amount of ppl in my family who had/died from cancer so my oncologist set me up with it. Happy to know your surgery went well.

  • terrysanchez
    terrysanchez Member Posts: 10
    #15
    repaid said:

    early signs

    I had the testing done to let the DRs  know what to look for  should a loved  one have some sort of signs early on. I have a lot of different DRs , and have had to educate them on BHDS ,as most have never heard of it. I myself still have chromophobe rcc. Was to have my MRI scans done on Friday but there  was a problem in radiology, so am waiting for a call when they can reschedule . My best to you.

    wishing you all the best!

    wishing you all the best!

  • terrysanchez
    terrysanchez Member Posts: 10
    #16
    medic1971 said:

    We have much in common

    Hi Terry,

    I too had a surgery at MD Anderson to remove two small renal masses.  One was 2.2cm and the other was only 8mm.  Both of which were chromophobe.  Dr. Karam was able remove both tumors and I kept over 95% of my right kidney.  That was back in 2015.  In November of 2017 I finally went back down to MD Anderson for genetic counseling.  (I meant to go sooner, but life kept getting in the way).  I had 23 different tests ran only a handful of those tests were for kidney cancer.  The rest were done for breast and ovarian cancers.  The reason they tested me for the latter is because those types of cancers run strong in my family and the fact that I have a daughter.  I am happy to report that everything came back clean.  The cost of all that genetic testing was less than a $100.  Here's the only catch, if you do decide to have that testing done it takes about 6 months to get an appointment.  The test results took about a week to come back.   

    Any questions please feel free to ask.

    So glad everything came back

    So glad everything came back clean from your genetic test.  I wish you all the best!

  • terrysanchez
    terrysanchez Member Posts: 10
    #17
    ribauerl said:

    I'm a Chromie too

    I was 37 when I was dx'd with kidney cancer.  I was told the same thing; that it had a 5% chance to come back.  Mine was 1.5 cm or the size of a nickel.  They found it completely by accident.  Since I have colitis they wanted to do a CT scan looking for scar tissue in my colon when they found it.  Since then I've had two CT scans and many chest Xrays.  My dad's mom had kidney cancer as well.  Her's was the size of a grapefruit and had already metastasized to her lungs and brain when they discovered it and 9 months later she passed away.

    I am an ex smoker.  I'd quit a few years before they found it, but it dind't make me feel any better about it.  When I asked what caused it, without flinching, the Dr immediately shot back that it was caused by obesity and it certainly could be since I'm about 100 pounds overweight and have been most of my adult life.  

    I've also had many issues with hernias and colitis, but my primary question/complaint is that I think about it every day and I can't quit.  If I have a headache I immediately think I have a brain tumor.  If I have any kind of abdominal pain I immediately think I'm full of cancer, etc.  I've had panic attacks for years, but now the panic attacks have morphed into this hypochondriac-ism problem.  

    I take Ativan when I have those irrational thoughts, but I don't take anything else as far as anti-depressant/anti-psychotic, etc because of the side effects.  I'm sure I'm not alone in this, but I'm wondering how everyone else copes after hearing they have a malignancy?

    I havent had the genetic testing as I'm scared to death of the results!  My grandmothers both had cancer during their lives and since my one grandmother died from kidney cancer I probably have a higher than average probability of carrying the gene.  

    Richard.

    Thanks for sharing your story

    Thanks for sharing your story with me, Richard.  It is very hard not to worry isn’t it?  I’m kind of a hypochondriac myself.  Glad they found your kidney cancer early!

  • terrysanchez
    terrysanchez Member Posts: 10
    #18
    AnnissaP said:

    Hi. Glad you found us and are

    Hi. Glad you found us and are reaching out. I did not have the same type of kidney cancer but am going for genetic testing in July. There was a large amount of ppl in my family who had/died from cancer so my oncologist set me up with it. Happy to know your surgery went well.

    Thank you! Hope all goes
    Thank you! Hope all goes well with your genetic testing!
  • klj15
    klj15 Member Posts: 38
    #19
    Chrome here too. Radical neph

    Chrome here too. Radical neph on 03/21/17 - 16.9cm. It was about the size of a football taking up my entire left abdomen. I had just turned 40 in 12/2016. No prior history of kidney problems and no known family history of kidney disease. My doctor didn’t think I needed genetic testing, but we pushed for it and demanded it. My first test was ordered wrong by the lab. The only thing that came out of that test was a variance of unknown significance in the NBN gene, which can be linked to breast cancer. I am waiting on the results of the correct panel that my doctor wanted to check for BHD and other kidney related cancer issues. 

  • ZVM
    ZVM Member Posts: 21
    #20
    Had genetic testing

    Hello Terry and all, 

    I had genetic testing for my Chromophobe RCC even though I was 62 when dx. My local oncologist felt it was warranted because of a strong family history of cancer, though not kidney. I was referred to the Cleveland Clinic for testing. Due to insurance issues I paid for it out of pocket to simplify matters & get it accomplished quickly. It was $500, which I considered money well-spent, since I have a son & grandchild. Cleveland was pleasant to work with. The results came back negative, thankfully.

    Best wishes to all on this RCC journey.

     

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