Welcome to the new Cancer Survivors Network website! Existing members can click HERE to review the changes and new features on CSN.

Family Affair

Nana4life
Nana4life Member Posts: 78

I wanted to update you on my family affair. May 2015 I have been diagnosed with kidney cancer. Had surgery chromobe renal cell stage 3. Going in for my first scan on Thurs. 23rd. results on the 29th.

My son, 36 years old father of two, has kidney cancer and scheduled for radical nephrectomy on Nov. 12. 

All I can say is I am going to fight my **** off to find out what the hell is going on here. I am seeing doctor who will be doing genetic testing. In the meantime I am doing all I can to keep my thoughts postive and upbeat. Being Healthy and strong. 

Please keep us in your thoughts and prayers. This really sucks.

Nana4life

Comments

  • dhs1963
    dhs1963 Member Posts: 513
    Contact NIH

    They have a study on heriditary RCC (my father has it and my grandfather died of it).

  • sblairc
    sblairc Member Posts: 585
    I will keep him and you in my thoughts.

    As you move forward, please consider the suggestion to contact the NIH. Please keep us updated on all of this. 

    My husband was 47 when he had his surgery. He also had Chromophobe. We were told it was not genetic, and not to worry. Luckily I'm meeting with oncologist this morning so I will now ask. 

    Our daugher was 7 years old at the time. 

    It was tremendously hard on me as his wife. He got diagnosed in the ER after I rushed him to the hospital with excruciating pain, bleeding, and vomitting to the point of almost passing out. 

    Please let your family know if they have any questions, ANY AT ALL, they can message me here. I'd be more than willing to help answer what I can. 

     

  • NewDay
    NewDay Member Posts: 272
    sblairc said:

    I will keep him and you in my thoughts.

    As you move forward, please consider the suggestion to contact the NIH. Please keep us updated on all of this. 

    My husband was 47 when he had his surgery. He also had Chromophobe. We were told it was not genetic, and not to worry. Luckily I'm meeting with oncologist this morning so I will now ask. 

    Our daugher was 7 years old at the time. 

    It was tremendously hard on me as his wife. He got diagnosed in the ER after I rushed him to the hospital with excruciating pain, bleeding, and vomitting to the point of almost passing out. 

    Please let your family know if they have any questions, ANY AT ALL, they can message me here. I'd be more than willing to help answer what I can. 

     

    NIH a great idea

    I second the opinion about NIH.  They are experts in hereditary RCC and are the ones that discovered some of them.  They will take care of genetic testing and you can be sure that you are seeing the best.  The fact that you and your son have it and the fact that he is so young, both point to the likelyhood that it is hereditary.  Also, since you are chromophobe, it would be a really good idea to see an RCC specialist if you aren't already since the treatment for chromophobe may differ from that used for clear cell.

    Best to you both,

    Kathy

  • Footstomper
    Footstomper Member Posts: 1,237
    NewDay said:

    NIH a great idea

    I second the opinion about NIH.  They are experts in hereditary RCC and are the ones that discovered some of them.  They will take care of genetic testing and you can be sure that you are seeing the best.  The fact that you and your son have it and the fact that he is so young, both point to the likelyhood that it is hereditary.  Also, since you are chromophobe, it would be a really good idea to see an RCC specialist if you aren't already since the treatment for chromophobe may differ from that used for clear cell.

    Best to you both,

    Kathy

    Genetics

    I confess that when I was diagnosed I insisted my elder bro was tested. He was clear, but it was good to know.

  • Allochka
    Allochka Member Posts: 974

    Genetics

    I confess that when I was diagnosed I insisted my elder bro was tested. He was clear, but it was good to know.

    Your son is young and will

    Your son is young and will tolerate the surgery excellently. And his two children will motivate him to stay NED for many-many years. Very sorry to hear theses news...

  • Nana4life
    Nana4life Member Posts: 78
    dhs1963 said:

    Contact NIH

    They have a study on heriditary RCC (my father has it and my grandfather died of it).

    NIH

    Thank you I will contact them. 

    No one on either my dads or moms side had it that we know of. Im from a family of 11 siblings. No one as of yet has had any cancer. 

    This is just so random. I am doing some genetic work so it will be interesting to see.

    Thank you I will keep you posted.

  • Nana4life
    Nana4life Member Posts: 78
    sblairc said:

    I will keep him and you in my thoughts.

    As you move forward, please consider the suggestion to contact the NIH. Please keep us updated on all of this. 

    My husband was 47 when he had his surgery. He also had Chromophobe. We were told it was not genetic, and not to worry. Luckily I'm meeting with oncologist this morning so I will now ask. 

    Our daugher was 7 years old at the time. 

    It was tremendously hard on me as his wife. He got diagnosed in the ER after I rushed him to the hospital with excruciating pain, bleeding, and vomitting to the point of almost passing out. 

    Please let your family know if they have any questions, ANY AT ALL, they can message me here. I'd be more than willing to help answer what I can. 

     

    not genetic hmmm

    Im glad to hear that its not genetic. Lets pray when they remove it that they were mistaken and it's benign. The doctors are extremely baffled at the rarity of this situation. He had this tumor embolized after a severe rupture which caused massive bleeding internally. He was in another country at the time and was flown back here to have the embolization done.At the time he was told it was an angiopiloma and He had been fairly consistent with checkups and scans but neglected to in the past few years. Then when my situation came in he decided to get checked and now here we are. The same tumor has grown and now they are now saying that it was probably not an angiopiloma. We are quite confused. 

    I will definetly keep you posted

    Thank you

  • Jan4you
    Jan4you Member Posts: 1,327
    Nana4life said:

    not genetic hmmm

    Im glad to hear that its not genetic. Lets pray when they remove it that they were mistaken and it's benign. The doctors are extremely baffled at the rarity of this situation. He had this tumor embolized after a severe rupture which caused massive bleeding internally. He was in another country at the time and was flown back here to have the embolization done.At the time he was told it was an angiopiloma and He had been fairly consistent with checkups and scans but neglected to in the past few years. Then when my situation came in he decided to get checked and now here we are. The same tumor has grown and now they are now saying that it was probably not an angiopiloma. We are quite confused. 

    I will definetly keep you posted

    Thank you

    Gosh, I am so sorry for all

    Gosh, I am so sorry for all you and your son are going through, ENUFF!

    Besides being gentic, possibly, I wonder if it isn't environmental?

    Just a thought..

    Let us know how things are going. May your son have a decent recovery.

    Gentle hugs with healing vibes!

    Jan

  • Jan4you
    Jan4you Member Posts: 1,327
    Nana4life said:

    not genetic hmmm

    Im glad to hear that its not genetic. Lets pray when they remove it that they were mistaken and it's benign. The doctors are extremely baffled at the rarity of this situation. He had this tumor embolized after a severe rupture which caused massive bleeding internally. He was in another country at the time and was flown back here to have the embolization done.At the time he was told it was an angiopiloma and He had been fairly consistent with checkups and scans but neglected to in the past few years. Then when my situation came in he decided to get checked and now here we are. The same tumor has grown and now they are now saying that it was probably not an angiopiloma. We are quite confused. 

    I will definetly keep you posted

    Thank you

    Gosh, I am so sorry for all

    Gosh, I am so sorry for all you and your son are going through, ENUFF!

    Besides being gentic, possibly, I wonder if it isn't environmental?

    Just a thought..

    Let us know how things are going. May your son have a decent recovery.

    Gentle hugs with healing vibes!

    Jan

  • dhs1963
    dhs1963 Member Posts: 513
    Nana4life said:

    not genetic hmmm

    Im glad to hear that its not genetic. Lets pray when they remove it that they were mistaken and it's benign. The doctors are extremely baffled at the rarity of this situation. He had this tumor embolized after a severe rupture which caused massive bleeding internally. He was in another country at the time and was flown back here to have the embolization done.At the time he was told it was an angiopiloma and He had been fairly consistent with checkups and scans but neglected to in the past few years. Then when my situation came in he decided to get checked and now here we are. The same tumor has grown and now they are now saying that it was probably not an angiopiloma. We are quite confused. 

    I will definetly keep you posted

    Thank you

    It might be genetic

    I had a big fight with one doctor about this.  Basically, his theory was if it did not match something that is known, it is not genetic.  

    At NIH, they look at the odds.  It is possible for multiple members of a family to get the same tumor but it not be genetic:  if they are exposed to the same environment.  

    But, in my families case, something cause the multigenerational cancer.  We don't know what.  But, NIH is explored it.  

  • Jojo61
    Jojo61 Member Posts: 1,309
    I am so sorry to hear about

    I am so sorry to hear about this, Nana4life. The protective instincts of a parent make this so painful....but you are already in the "fight" mode. Good for you!

    We are here for you!

    Keeping  you in my thoughts and prayers.

    Hugs

    \jojo

  • APny
    APny Member Posts: 1,995
    Jojo61 said:

    I am so sorry to hear about

    I am so sorry to hear about this, Nana4life. The protective instincts of a parent make this so painful....but you are already in the "fight" mode. Good for you!

    We are here for you!

    Keeping  you in my thoughts and prayers.

    Hugs

    \jojo

    Do you know how large his

    Do you know how large his tumor is? Would it be possible to do a partial nephrectomy and save some of his kidney? Perhaps his surgeon is not experienced in partial nephrectomies but before they remove his whole kidney I think he shoudl definitely get a second opinion. Unless of course it's in a position where that can't be done but still, I think another opinion would be a good idea.

  • sblairc
    sblairc Member Posts: 585
    dhs1963 said:

    It might be genetic

    I had a big fight with one doctor about this.  Basically, his theory was if it did not match something that is known, it is not genetic.  

    At NIH, they look at the odds.  It is possible for multiple members of a family to get the same tumor but it not be genetic:  if they are exposed to the same environment.  

    But, in my families case, something cause the multigenerational cancer.  We don't know what.  But, NIH is explored it.  

    Short article on kidney cancer and genetics below

    Good article below if anyone is interested. 

    http://www.cancer.gov/types/kidney/hp/kidney-genetics-pdq

  • mrou50
    mrou50 Member Posts: 389
    ONC

    When I was diagnosed the first time I asked my ONC about how a person gets this disease.  He said there are many ways including genetics, and environmental, as well as contributing factors regarding body size.  He said the only way to tell if it was genetic was to run tests and even that would not be 100 percent conclusive.  His advise to me was to have my siblings checked out and my children as they get older.  My siblings all but one have been scanned and so far no problems.   He also told me that Genetic testing is expensive and insurance does not cover it in most cases.

  • Nana4life
    Nana4life Member Posts: 78
    APny said:

    Do you know how large his

    Do you know how large his tumor is? Would it be possible to do a partial nephrectomy and save some of his kidney? Perhaps his surgeon is not experienced in partial nephrectomies but before they remove his whole kidney I think he shoudl definitely get a second opinion. Unless of course it's in a position where that can't be done but still, I think another opinion would be a good idea.

    Size 5cm

    Aphny

    the size is around 5cm. this is the second opinion doctor and he is going to try to do partial but with the position and the fact that he had a rupture in the past he thinks they may not be able. So going in with options. He's going to Houston Methodist in Texas. Anyone familiar? Teaching hospital. I've checked out the doctor and he looks good. He will be doing robotic. He says my son will be up and about in two weeks. Not sure about that.  thank you for you input. All this info is helping Us to fight this.

  • Nana4life
    Nana4life Member Posts: 78
    APny said:

    Do you know how large his

    Do you know how large his tumor is? Would it be possible to do a partial nephrectomy and save some of his kidney? Perhaps his surgeon is not experienced in partial nephrectomies but before they remove his whole kidney I think he shoudl definitely get a second opinion. Unless of course it's in a position where that can't be done but still, I think another opinion would be a good idea.

    Size 5cm

    Aphny

    the size is around 5cm. this is the second opinion doctor and he is going to try to do partial but with the position and the fact that he had a rupture in the past he thinks they may not be able. So going in with options. He's going to Houston Methodist in Texas. Anyone familiar? Teaching hospital. I've checked out the doctor and he looks good. He will be doing robotic. He says my son will be up and about in two weeks. Not sure about that.  thank you for you input. All this info is helping Us to fight this.

  • Nana4life
    Nana4life Member Posts: 78
    sblairc said:

    Short article on kidney cancer and genetics below

    Good article below if anyone is interested. 

    http://www.cancer.gov/types/kidney/hp/kidney-genetics-pdq

    Thanks
    yes I've been here

    Thanks

    yes I've been here looking at all these. These are incredibly helpful.

  • Nana4life
    Nana4life Member Posts: 78
    Jojo61 said:

    I am so sorry to hear about

    I am so sorry to hear about this, Nana4life. The protective instincts of a parent make this so painful....but you are already in the "fight" mode. Good for you!

    We are here for you!

    Keeping  you in my thoughts and prayers.

    Hugs

    \jojo

    Thank you. Fight fight fight!

    Thank you. Fight fight fight! This mama bear will not let no evil monster get to her babies!!!

  • foxhd
    foxhd Member Posts: 3,181
    mrou50 said:

    ONC

    When I was diagnosed the first time I asked my ONC about how a person gets this disease.  He said there are many ways including genetics, and environmental, as well as contributing factors regarding body size.  He said the only way to tell if it was genetic was to run tests and even that would not be 100 percent conclusive.  His advise to me was to have my siblings checked out and my children as they get older.  My siblings all but one have been scanned and so far no problems.   He also told me that Genetic testing is expensive and insurance does not cover it in most cases.

    genetics

    Genetics are important when family members develope the same health problems. But the enviornmental aspect may be more important. If 10 unrelated people lived in the same house and drank from the same contaminated well, and if one of them developes cancer, then I think the odds say that someone else may develope cancer also.

    Coal miners and lung cancer come to mind. The enviornment is more risky than the genetics.

    In either event, family should be tested.

  • dhs1963
    dhs1963 Member Posts: 513
    foxhd said:

    genetics

    Genetics are important when family members develope the same health problems. But the enviornmental aspect may be more important. If 10 unrelated people lived in the same house and drank from the same contaminated well, and if one of them developes cancer, then I think the odds say that someone else may develope cancer also.

    Coal miners and lung cancer come to mind. The enviornment is more risky than the genetics.

    In either event, family should be tested.

    FOX, hate to disagree, but...

    Fox, I hate to disagree with you, but I think one of the issues is the role of genetics is not really understood.  When 10 people are exposed to the same envronment, why do only 3 get the cancer?  Is there a immunoresponse helping the others or am I just unlucky?

    The real answer is probably somewhere in between.  There are studies in Iceland -- where they a very closed society with closely tracked genetics -- that shows more than half of all kidney cancers there are following family liniages.

  • APny
    APny Member Posts: 1,995
    Nana4life said:

    Size 5cm

    Aphny

    the size is around 5cm. this is the second opinion doctor and he is going to try to do partial but with the position and the fact that he had a rupture in the past he thinks they may not be able. So going in with options. He's going to Houston Methodist in Texas. Anyone familiar? Teaching hospital. I've checked out the doctor and he looks good. He will be doing robotic. He says my son will be up and about in two weeks. Not sure about that.  thank you for you input. All this info is helping Us to fight this.

    Wishing your son the very

    Wishing your son the very best and yes, there's always the risk that a partial will become a full one. I too was told that prior to surgery. Hoping all goes well for both of you!

  • Jojo61
    Jojo61 Member Posts: 1,309
    dhs1963 said:

    FOX, hate to disagree, but...

    Fox, I hate to disagree with you, but I think one of the issues is the role of genetics is not really understood.  When 10 people are exposed to the same envronment, why do only 3 get the cancer?  Is there a immunoresponse helping the others or am I just unlucky?

    The real answer is probably somewhere in between.  There are studies in Iceland -- where they a very closed society with closely tracked genetics -- that shows more than half of all kidney cancers there are following family liniages.

    Genetics

    When I was diagnosed, my oncologist suggested that my children get an ultrasound check on their kidneys every 5 years, as well as my siblings....I just assumed this was a normal reaction for any cancer diagnosis.

    Hugs

    Jojo

  • Nana4life
    Nana4life Member Posts: 78
    mrou50 said:

    ONC

    When I was diagnosed the first time I asked my ONC about how a person gets this disease.  He said there are many ways including genetics, and environmental, as well as contributing factors regarding body size.  He said the only way to tell if it was genetic was to run tests and even that would not be 100 percent conclusive.  His advise to me was to have my siblings checked out and my children as they get older.  My siblings all but one have been scanned and so far no problems.   He also told me that Genetic testing is expensive and insurance does not cover it in most cases.

    I have 10 siblings. Do you

    I have 10 siblings. Do you think I should ask them all to get checked?

    also two other children. One 33 and expecting another 24 yrs old. I'm afraid to create too much fear but on the other hand. Early detection is key.

     

  • Footstomper
    Footstomper Member Posts: 1,237
    Nana4life said:

    I have 10 siblings. Do you

    I have 10 siblings. Do you think I should ask them all to get checked?

    also two other children. One 33 and expecting another 24 yrs old. I'm afraid to create too much fear but on the other hand. Early detection is key.

     

    Why not?

    Why not just tell them about the possibility of a genetic component to the disease and let them decide for themselves?