Genetic Testing

Trucker1
Trucker1 Member Posts: 82
in Kidney Cancer #1

Genetic's nurse called today and said I did not test postive for any of the 24 known cells for cancer. I was worried about the VHL thing!!! Thank the lord, I feel this is great news!

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Comments

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #2
    Good for u! I am supposed to

    Good for u! I am supposed to be going for this at some point too.

  • sasha_jax4
    sasha_jax4 Member Posts: 43
    #3
    My uro said no Genetic testing

    i was thinking because I was 37 I should have genetic testing. Glad yours came back good. What brought you to testing?

  • Kidneybeans
    Kidneybeans Member Posts: 39
    #4
    I don’t know all the 24 types

    I don’t know all the 24 types. Did they check for oncocytoma? This mimics RCC but is usually benign. It’s associated with Birt Hogg Dube Syndrome As is chromophobe RCC. BHD is a rare condition that causes some non cancerous skin conditions in some people and non cancerous lung problems.

  • Kidneybeans
    Kidneybeans Member Posts: 39
    #5
    theres also a combo type of

    theres also a combo type of chromophobe and oncocytoma

  • Trucker1
    Trucker1 Member Posts: 82
    #6
    Hmmm

    Sasha, all the reading I have done, the folks on these forums and my doctors said I should get the testing done to check and see what might be happening to my cells. If I had a link it could change my course of treatment and it could warrant a good conversation with my siblings and my child if I had certain genetics links...The biggest push is our age, I'm 40 and for us to get RCC so early is alarming....Rcc sucks at any age but for younger folks it raises a lot of eyebrows....I suggest getting it done, my insurance had no problems paying for it...It put my mind a little at ease as well... 

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #7
    I just got an appointment for

    I just got an appointment for genetic testing. It isn't until July though (welcome to Canada's health system). They will probably think I made up my family history ahahaha. Nine people had cancer (10 incl myself)  and 7 died from it. Crazy!!! I think it will be interesting to see what they say.

  • Kidneybeans
    Kidneybeans Member Posts: 39
    #8
    Maybe check for birthday Hogg

    Maybe check for birt Hogg dube. Annissa do you have chromophobe?

  • Kidneybeans
    Kidneybeans Member Posts: 39
    #9
    It's genetic

    It's genetic

  • stub1969
    stub1969 Member Posts: 985 Member
    edited January 2018 #10
    Trucker

    I agree that this is good news.  I was 47 when diagnosed with a tumor a little over 5cm.  Turned out to be chromophobe.  At my last scan, the doctor that I saw mentioned genetic testing at my next scan in May.  We'll what happens. 

    Stub

  • sasha_jax4
    sasha_jax4 Member Posts: 43
    edited January 2018 #11
    My uro said no need

    when I was diagnosed I asked uro about genetic testing. He said no need it was an anomaly at my age with no family history. I have been having a hard time with it. And brought it up a few times only to be shot down. I’m glad to hear you guys are doing it. It makes me feel like I am correct in my instinct to search further. I’m not a dr. And don’t want to tell him how to do his job, but I do understand science and genetics and thought it was worth a look. 

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #12
    Sasha

    Ready for this? This is why I am being sent:

    Dad died from cancer and so did his mom. His bro has it and his dad had it. My mom's mom had 2 types of cancer, 3 bros died from it and her sister also died at 46 from breast cancer. They found my tumor at 38 but was officially diagnosed at 39!! Dr said he is sending me bc I was diagnosed so young with kidney cancer and also because I have a 16 yr old son. It is important to know for his sake. The cancers my family has had are breast, lung, stomach, cervical, skin, prostate and kidney (me). Ugggh lol.

     

  • klj15
    klj15 Member Posts: 38
    edited January 2018 #13
    genetic testing

    I get my test results on Tuesday. From what I was able to review online, it appears that I am in the clear too with BHD and Von-Lippel (?). Fingers cross I was reading my results correctly. In addition to the cancer panel specific to the chRCC, I had  the BRCA-1 and BRCA-2 test done. That one also came up negative.

    I demanded Genetic testing. I have military health care insurance, and we are lucky to have a Geneticist at our base. There was no reason for them to deny my request since it could be done by an in-house provider.

  • Trucker1
    Trucker1 Member Posts: 82
    edited January 2018 #14
    PUSH FOR IT!!

    You are your best advocate!! If you are below 47 years old you should have the testing done.It's your life.Politely agree to disagree with the doc!!

  • sasha_jax4
    sasha_jax4 Member Posts: 43
    #15
    It’s important

    to those of you who tested negative yay! Anissa my mom had breast cancer, gma had colon cancer and gpa had stomach cancer. Me with kidney. I have an ovary that we are playing the wait and see game, and one negative breast biopsy thank god! I am sorry to hear so many in your family were effected by cancer! I think I am going to push for testing. I have 4 kids I need to know their future and mine.

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #16
    Kidneybeans said:

    Maybe check for birthday Hogg

    Maybe check for birt Hogg dube. Annissa do you have chromophobe?

    No Clear Cell

    No Clear Cell

  • AnnissaP
    AnnissaP Member Posts: 632 Member
    #17
    Uuufff! I def would!! I hope

    Uuufff! I def would!! I hope you get someone to listen to you!!

  • klj15
    klj15 Member Posts: 38
    #18
    Test results

    I had my follow up with the geneticist. My BRAC 1 and 2 were negative, which I already knew. The lab ordered the wrong cancer panel, so it had to be re- drawn yesterday. On a positive note, the wrong panel did show an uncertain result in the NBN gene. Not enough data for a certain result. The NBN mutation could suggest a higher likelihood of breast cancer. That is the one cancer that we don’t have a family history of, so I hope it’s nothing to worry about in the future. Anxious for my other results. I’ll get those in 4 weeks and will probably follow up within a month of the results coming in. 

  • klj15
    klj15 Member Posts: 38
    edited February 2018 #19
    klj15 said:

    Test results

    I had my follow up with the geneticist. My BRAC 1 and 2 were negative, which I already knew. The lab ordered the wrong cancer panel, so it had to be re- drawn yesterday. On a positive note, the wrong panel did show an uncertain result in the NBN gene. Not enough data for a certain result. The NBN mutation could suggest a higher likelihood of breast cancer. That is the one cancer that we don’t have a family history of, so I hope it’s nothing to worry about in the future. Anxious for my other results. I’ll get those in 4 weeks and will probably follow up within a month of the results coming in. 

    Final results for the kidney cancer genetic panel

    I was negative for all genetic conditions related to kidney cancer. There was no genetic link to my cancer. In a nutshell, my cancer was just an unfortunate medical issue that came out of nowhere. No prior problems with my kidneys, kidney stones, blood in urine, blood pressure, etc... No family history of kidney problems. (Relatively) young when diagnosed - I had just turned 40. Relatively healthy, worked out, ate decent. I'm thrilled that there is nothing else I need to be concerned about, but that leave so many unanswered what/where/why questions. For now, I will just be greatful and thankful.

  • Wehavenotimeatall
    Wehavenotimeatall Member Posts: 488 Member
    #20
    klj15 said:

    Final results for the kidney cancer genetic panel

    I was negative for all genetic conditions related to kidney cancer. There was no genetic link to my cancer. In a nutshell, my cancer was just an unfortunate medical issue that came out of nowhere. No prior problems with my kidneys, kidney stones, blood in urine, blood pressure, etc... No family history of kidney problems. (Relatively) young when diagnosed - I had just turned 40. Relatively healthy, worked out, ate decent. I'm thrilled that there is nothing else I need to be concerned about, but that leave so many unanswered what/where/why questions. For now, I will just be greatful and thankful.

    Well a bit of good news

    combined with your chromie.... hope you hit the lucky strike and you say **** off c*****

    Annie

    sorry for my rudeness... it’s my Irish.. other than that I am the most well behaved person on the planet

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    #21
    Wehavenotimeatall said:

    Well a bit of good news

    combined with your chromie.... hope you hit the lucky strike and you say **** off c*****

    Annie

    sorry for my rudeness... it’s my Irish.. other than that I am the most well behaved person on the planet

    Hi Annie,

    I must be ruder than you. At first I didn't see that c*****  means cancer.

    Steve.

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