Family History?

2

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #22
    LISAinTN said:

    Testing
    Valerie, I was 46 when I was diagnosed, too. Limelife and Gary, I think 50 and under is considered young. (I remember when I was in my teens and early 20's and wanted to be older. Now I'm thrilled to be called young. LOL)

    My son is 26 and my urologist ordered a baseline ultrasound for him and he will be retested every 2 years. I am so glad they are keeping an eye on him this often. My urologist also recommended that all my blood relations on my paternal Grandfather's side be tested as it seems to have started with him in his 60's and now me in my 40's. This article that Rae posted earlier is really good regarding this.

    http://www.cancer.net/patient/All+About+Cancer/Genetics/The+Genetics+of+Kidney+Cancer

    From what I can gather, my close relations have a 50% higher chance of getting kidney cancer because I was so young when I got it. My son was not thrilled about being tested, but I asked him to do it for me. I think he took it more seriously after meeting with the urologist himself and hearing what he had to say. It's a load off of me to have them following him like this.

    Blessings,
    Lisa

    Testing
    Well done Lisa - good call. Your son will thank you if he is ever affected because it will be caught very early, but let's hope that never happens. In that case I'm sure he will appreciate your having looked out for him anyway.
  • LISAinTN
    LISAinTN Member Posts: 143
    #23
    Texas_wedge said:

    Testing
    Well done Lisa - good call. Your son will thank you if he is ever affected because it will be caught very early, but let's hope that never happens. In that case I'm sure he will appreciate your having looked out for him anyway.

    Thanks
    TX, thanks. He's 26 years old, so you know, he has to do the "Oh Mom" and eyeroll thing yet, once in awhile. I think he's growing out of that and hopefully soon will move to the "My Mom's not so stupid" stage. LOL

    Blessings,
    Lisa
  • garym
    garym Member Posts: 1,647
    #24
    LISAinTN said:

    Thanks
    TX, thanks. He's 26 years old, so you know, he has to do the "Oh Mom" and eyeroll thing yet, once in awhile. I think he's growing out of that and hopefully soon will move to the "My Mom's not so stupid" stage. LOL

    Blessings,
    Lisa

    The circle of life...
    I remember when...I think I was 28 with 4 kids of my own when mom and dad became smart overnight, fyi, they attained genius status when my kids hit their teens. Mom used to say "Ahhhh, the sweet revenge of grandkids.", how right she was.

    LOL,

    Gary
  • Michael6701
    Michael6701 Member Posts: 26
    #25
    LISAinTN said:

    Hi
    Hi TX, I'm just asking out of curiosity. Just wondering if this tends to run in families. My Doc is concerned as it's been in my family and don't a lot of cancer's run in families? I've always thought it significant if there's a history of a cancer in a family.

    I've already put out the word to my very large extended family that they are supposed to get baseline ultrasounds of their kidney's so they can keep an eye on it. Although, most don't seem to be taking it seriously.

    Blessings,
    Lisa

    Is RCC Inherited?
    I believe that it is; I had mine removed last June and it is the same cancer that killed my three siblings in their early 50's (I am 67). My physician suggested some genetic testing to determine if mine was in fact an "inherited" cancer, and if it was to have my children tested as well. I declined because there is nothing my children can do to prevent it; they can only get their baseline scans and repeat them periodically - and I have already strongly encouraged them to do so. Besides, I read that such testing, if positive, can be psychologically damaging in some people. Of Course, my doctor would have liked me to do so being that he practices in a reknown teaching hospital and the testing and subsequent results could have benefitted their research programs.
  • MikeK703
    MikeK703 Member Posts: 235
    #26
    Michael6701 said:

    Is RCC Inherited?
    I believe that it is; I had mine removed last June and it is the same cancer that killed my three siblings in their early 50's (I am 67). My physician suggested some genetic testing to determine if mine was in fact an "inherited" cancer, and if it was to have my children tested as well. I declined because there is nothing my children can do to prevent it; they can only get their baseline scans and repeat them periodically - and I have already strongly encouraged them to do so. Besides, I read that such testing, if positive, can be psychologically damaging in some people. Of Course, my doctor would have liked me to do so being that he practices in a reknown teaching hospital and the testing and subsequent results could have benefitted their research programs.

    Hereditary?
    According to cancer.net, there is a rare condition called hereditary papillary renal cell carcinoma that increases the risk of getting papillary kidney cancer. The good news is that not everyone who has the condition will get the cancer.

    http://www.cancer.net/patient/Cancer+Types/Hereditary+Papillary+Renal+Cell+Carcinoma
  • girlypants
    girlypants Member Posts: 31
    #27
    garym said:

    The circle of life...
    I remember when...I think I was 28 with 4 kids of my own when mom and dad became smart overnight, fyi, they attained genius status when my kids hit their teens. Mom used to say "Ahhhh, the sweet revenge of grandkids.", how right she was.

    LOL,

    Gary

    Found it at 28
    The doctors accidentally stumbled upon my kidney cancer while checking my gallbladder. My doctor is convinced that since I am 28 it has to be genetics, that I have the gene for it. Thanks mom and dad! jk. They had my sister and brother both ultra-sounded to check to see if they have it yet, or anything suspicions. Both came back clear but they both have to get checked every few years. Anyone know where I can get genetic testing for it? I heard its expensive but I want to know if I truly have the gene.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #28
    girlypants said:

    Found it at 28
    The doctors accidentally stumbled upon my kidney cancer while checking my gallbladder. My doctor is convinced that since I am 28 it has to be genetics, that I have the gene for it. Thanks mom and dad! jk. They had my sister and brother both ultra-sounded to check to see if they have it yet, or anything suspicions. Both came back clear but they both have to get checked every few years. Anyone know where I can get genetic testing for it? I heard its expensive but I want to know if I truly have the gene.

    Gene testing
    Maybe you'll get answers here from people who have undergone testing but meantime this link may give you some useful background info.

    http://www.cancer.gov/cancertopics/understandingcancer/genetesting
  • rae_rae
    rae_rae Member Posts: 300 Member
    #29
    Texas_wedge said:

    Gene testing
    Maybe you'll get answers here from people who have undergone testing but meantime this link may give you some useful background info.

    http://www.cancer.gov/cancertopics/understandingcancer/genetesting

    Genetic testing
    Your doctor should be able to refer you to a genetic counselor. They will do an evaluation on your background and medical history to try to determine what type, if any, of genetic mutation may be most likely before they decide to do actual testing. Keep in mind it may be genetic but they may not have found the mutation for it yet. In the meantime, educate yourself on the different types of genetic causes of kidney cancer. I was able to eliminate many after reading the symptoms of the diseases. I was tested for VHL, and do not have it. So there is currently no known genetic cause for my father's and my kidney cancer.
  • Michael6701
    Michael6701 Member Posts: 26
    #30
    girlypants said:

    Found it at 28
    The doctors accidentally stumbled upon my kidney cancer while checking my gallbladder. My doctor is convinced that since I am 28 it has to be genetics, that I have the gene for it. Thanks mom and dad! jk. They had my sister and brother both ultra-sounded to check to see if they have it yet, or anything suspicions. Both came back clear but they both have to get checked every few years. Anyone know where I can get genetic testing for it? I heard its expensive but I want to know if I truly have the gene.

    Genetic Testing
    I had my RCC surgery at UCSF and they do the genetic testing there. I suspect that any major teaching and research hospital would have that capability. The question is why? If you are trying to decide whether or not to conceive it might have some value; otherwise I'm not sure it does. If you have it, it doesn't really matter how you got it. And if you and your children have that gene it doesn't necessarily mean that they will get the cancer, or that they won't, even without the gene. And whether or not you have the gene, you cannot prevent getting the cancer. All you can do is get frequent screenings ... and you already know that is what you have to do anyway.

    There is a lot of information on the web on the subject. I would recommend that you read up on the subject before you commit to the testing.

    Note: I don't have any special knowledge on the subject; I am only expressing an opinion formulated after contemplating genetic testing for me and my family.
  • lawmanmike
    lawmanmike Member Posts: 29
    #31
    Thanks for this thread
    Lisa - thank you for this thread. I am 3 weeks out from surgery and have been urging my mother and sisters to get checked out as well as we have no known family history of kidney disease or cancer. My Mom was first in to the doctor and they found some abnormalities (though no tumor) and they are admitting her for kidney biopsy and further tests... some of the links and info have been very helpful - so thank you and keep up the good work! Congrats on your good scans too! Personally, I think it is best to have frequent follow up tests just to stay on top of it. My insurance company might not like it but I have a lot of living left to do - and if this cancer comes back I want to catch it early!
  • nicmarie75
    nicmarie75 Member Posts: 57 Member
    #32
    lawmanmike said:

    Thanks for this thread
    Lisa - thank you for this thread. I am 3 weeks out from surgery and have been urging my mother and sisters to get checked out as well as we have no known family history of kidney disease or cancer. My Mom was first in to the doctor and they found some abnormalities (though no tumor) and they are admitting her for kidney biopsy and further tests... some of the links and info have been very helpful - so thank you and keep up the good work! Congrats on your good scans too! Personally, I think it is best to have frequent follow up tests just to stay on top of it. My insurance company might not like it but I have a lot of living left to do - and if this cancer comes back I want to catch it early!

    Hereditary RCC?
    My mom was diagnosed at 41 with RCC in early September 1998, she lost the battle Jan 8 1999 the day after her 42nd bday. I often wonder if I should be scanned. But my primary Dr. is fully aware of my family history and has not suggested I get scanned. I really want to make them test me just to be sure and have a baseline. I will be 37 on the 22nd.
  • LISAinTN
    LISAinTN Member Posts: 143
    #33
    lawmanmike said:

    Thanks for this thread
    Lisa - thank you for this thread. I am 3 weeks out from surgery and have been urging my mother and sisters to get checked out as well as we have no known family history of kidney disease or cancer. My Mom was first in to the doctor and they found some abnormalities (though no tumor) and they are admitting her for kidney biopsy and further tests... some of the links and info have been very helpful - so thank you and keep up the good work! Congrats on your good scans too! Personally, I think it is best to have frequent follow up tests just to stay on top of it. My insurance company might not like it but I have a lot of living left to do - and if this cancer comes back I want to catch it early!

    Hi Mike
    Hi Mike,

    Thanks and I'll be praying that everything goes okay for your Mom. After going through it, I know it's scary to think other's in a family could have it, too. I hope no one else in my family ever has this.

    As to the follow up tests, I wish I could go every 6 months for the rest of my life, but every 12 months is what they told me. I get checked every 6 months for the first 18 months and then every year after that. I'm just thankful they allow the follow up tests. It makes me feel better to know they will at least stay on top of it. I feel the same way you do. If it comes back, I want to know asap! Take care.

    Blessings,
    Lisa
  • LISAinTN
    LISAinTN Member Posts: 143
    #34
    nicmarie75 said:

    Hereditary RCC?
    My mom was diagnosed at 41 with RCC in early September 1998, she lost the battle Jan 8 1999 the day after her 42nd bday. I often wonder if I should be scanned. But my primary Dr. is fully aware of my family history and has not suggested I get scanned. I really want to make them test me just to be sure and have a baseline. I will be 37 on the 22nd.

    Definitely!
    Hi Nicmarie,

    I'm SO sorry about your Mom. That was just way too young for her to go. My heart is breaking for you. Yes, PLEASE demand testing for yourself. They just did a baseline ultrasound in January, on my son, who is 26 years old. He will be tested every 2 years for the rest of his life. My urologist felt that was necessary, simply because of the fact that I had it. If I had to, I would change doctors until I found one that would test me.

    Blessings,
    Lisa
  • Unknown
    Unknown
    #35
    Cancer thaat runs in the family
    Some kidney cancer does indeed run in families. The link previously posted, http://www.cancer.net/patient/All+About+Cancer/Genetics/The+Genetics+of+Kidney+Cancer, is indeed an excellent overview of genetic kidney cancer. Hints that kidney cancer in your family may be genetic include kidney cancer in more than one blood relative, diagnosis of kidney cancer at an early age (especially before age 50), an individual with more than one tumor in a kidney, or tumors in both kidneys. Diagnosis in an individual with more than one type of primary cancer , diagnosis of the same cancer in more than one generation, and diagnosis of cancer at an earlier age than in the previous generation can also hint that cancer runs in your family.

    Research is still ongoing in the genetics of kidney cancer and other cancers. My family (three cases of clear cell renal cell carcinoma in mother, her brother and her daughter) has participated in NIH’s study of inherited urologic cancer. We were told that the kidney cancer on our family is inherited, but it does not follow the pattern of any syndrome previously described. You or your relatives can be tested for genes already identified as the cause of a syndrome related to kidney cancer, but if the gene has not yet been identified, as in our family, there will be no test. More information about the NIH study can be found at http://bethesdatrials.cancer.gov/clinical-research/search_detail.aspx?ProtocolID=NCI-89-C-0086 .

    Some inherited cancer syndromes are associated with more than one primary cancer. Endometrial cancer also runs on my family. I have had it, as did my mother, her mother, and my maternal cousin, and we were all pre-menopausal. Several family members have had more than one primary cancer: kidney, thyroid and lung; kidney and endometrial; duodenal and endometrial; kidney and prostate. Other family members have had cancer of the bladder, stomach and non-Hodgkin’s lymphoma.

    The best way to keep your family safe is to gather as much information as possible about cancer in your family, including the exact pathological diagnosis, and the age at diagnosis and apply common sense. Ask for tests for the cancers that run in your family beginning at ages younger than the youngest age at diagnosis in your family.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #36
    unknown said:

    Cancer thaat runs in the family
    Some kidney cancer does indeed run in families. The link previously posted, http://www.cancer.net/patient/All+About+Cancer/Genetics/The+Genetics+of+Kidney+Cancer, is indeed an excellent overview of genetic kidney cancer. Hints that kidney cancer in your family may be genetic include kidney cancer in more than one blood relative, diagnosis of kidney cancer at an early age (especially before age 50), an individual with more than one tumor in a kidney, or tumors in both kidneys. Diagnosis in an individual with more than one type of primary cancer , diagnosis of the same cancer in more than one generation, and diagnosis of cancer at an earlier age than in the previous generation can also hint that cancer runs in your family.

    Research is still ongoing in the genetics of kidney cancer and other cancers. My family (three cases of clear cell renal cell carcinoma in mother, her brother and her daughter) has participated in NIH’s study of inherited urologic cancer. We were told that the kidney cancer on our family is inherited, but it does not follow the pattern of any syndrome previously described. You or your relatives can be tested for genes already identified as the cause of a syndrome related to kidney cancer, but if the gene has not yet been identified, as in our family, there will be no test. More information about the NIH study can be found at http://bethesdatrials.cancer.gov/clinical-research/search_detail.aspx?ProtocolID=NCI-89-C-0086 .

    Some inherited cancer syndromes are associated with more than one primary cancer. Endometrial cancer also runs on my family. I have had it, as did my mother, her mother, and my maternal cousin, and we were all pre-menopausal. Several family members have had more than one primary cancer: kidney, thyroid and lung; kidney and endometrial; duodenal and endometrial; kidney and prostate. Other family members have had cancer of the bladder, stomach and non-Hodgkin’s lymphoma.

    The best way to keep your family safe is to gather as much information as possible about cancer in your family, including the exact pathological diagnosis, and the age at diagnosis and apply common sense. Ask for tests for the cancers that run in your family beginning at ages younger than the youngest age at diagnosis in your family.

    Cancer genetics
    Gosh! What an informative posting, unlucky family and valuable contribution to knowledge - what these threads are all about. This will be of great value to those here who wanted more info on this topic. Thanks trishpm.
  • nicmarie75
    nicmarie75 Member Posts: 57 Member
    #37
    LISAinTN said:

    Definitely!
    Hi Nicmarie,

    I'm SO sorry about your Mom. That was just way too young for her to go. My heart is breaking for you. Yes, PLEASE demand testing for yourself. They just did a baseline ultrasound in January, on my son, who is 26 years old. He will be tested every 2 years for the rest of his life. My urologist felt that was necessary, simply because of the fact that I had it. If I had to, I would change doctors until I found one that would test me.

    Blessings,
    Lisa

    Thank You
    Thank you Lisa for the reply, I will tell my Dr. I insist on checking....everything I have read about this Cancer indicates that older men get it now young women like my mom. So very scary. I hope your son never has to face this disease (or cancer of any kind really) Unfortunately my moms was caught at Stage 4, her kidney tumor was like 8x10 I think and it was in her lungs and one other place (I forget at this moment) at DX in Sept. and spread to her brain by Dec. I hear everyone say this is such a slow growing type of Cancer, it makes me wonder how many years she had this tumor on her Kidney.

    Nichole
  • LISAinTN
    LISAinTN Member Posts: 143
    #38
    nicmarie75 said:

    Thank You
    Thank you Lisa for the reply, I will tell my Dr. I insist on checking....everything I have read about this Cancer indicates that older men get it now young women like my mom. So very scary. I hope your son never has to face this disease (or cancer of any kind really) Unfortunately my moms was caught at Stage 4, her kidney tumor was like 8x10 I think and it was in her lungs and one other place (I forget at this moment) at DX in Sept. and spread to her brain by Dec. I hear everyone say this is such a slow growing type of Cancer, it makes me wonder how many years she had this tumor on her Kidney.

    Nichole

    Nichole,
    It just can't hurt
    Nichole,

    It just can't hurt and "better safe then sorry". Did you get to talk to your doctor yet?

    Blessings,
    Lisa
  • livealive
    livealive Member Posts: 127
    #39
    Texas_wedge said:

    Cancer genetics
    Gosh! What an informative posting, unlucky family and valuable contribution to knowledge - what these threads are all about. This will be of great value to those here who wanted more info on this topic. Thanks trishpm.

    VHL Gene
    All with RCC, maybe get tested for mutation in the VHL gene, I did on Thursday...
    just google VGL gene..
    R
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #40
    livealive said:

    VHL Gene
    All with RCC, maybe get tested for mutation in the VHL gene, I did on Thursday...
    just google VGL gene..
    R

    VHL gene testing
    What prompted you to go for this - aggressiveness of tumour, family history? I gather it's fairly inexpensive, quick and easy. Wasit informative for you?
  • livealive
    livealive Member Posts: 127
    #41
    Texas_wedge said:

    VHL gene testing
    What prompted you to go for this - aggressiveness of tumour, family history? I gather it's fairly inexpensive, quick and easy. Wasit informative for you?

    VHL Gene
    I am early 40's, they found the 2.5 cm tumor 3 months ago, doc said I had it a few years, came down with pain 12 years ago....i.e. I was 30 or less, but I want to do everything I can to live...so this is 1 more step...

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