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Family History?

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

I had my 6 month results today and my tests were all clear! While I am happy about that and I plan to live my life like I'm cancer free, my urologist has concerns for a higher recurrence rate for me due to the fact that I am fairly young to have kidney cancer and I have a family history. My paternal grandfather died of kidney cancer that went to his brain. This has got me wondering, does anyone else here have a family history of kidney cancer? My son is 26 years old and just had a baseline ultrasound so they can keep an eye on him. He will be tested every 2 years. I'm concerned for my sister, too, so I wanted to ask about family histories of kidney cancer. Thanks!

Blessings,
Lisa

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

Congrats on your test results Lisa! Don't go leaving us now. Some of us will need your support. Although I am not aware of any other kidney cancer in my family, Both my sister and mother passed away due to complications from renal failure. Is there a relationship? Who knows. We probably all drank from the same well.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Thanks, Fox! I won't leave. :o)

tom_in_VT
Posts: 25
Joined: Jan 2012

I am happy you received such good news at your 6 month check ups. That's great, live big! No kidney issues in my family at all, my mother had a problem with ovarian cancer when I was very young, that's the only cancer I am aware of in my immediate family.
Again, great news - have a glass of your favorite adult beverage!!!
Toast the fight you have fought and are wining!

Regards,
Tom

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Lisa, good news indeed and long may it continue.

Wouldn't you be better asking your urologist why he thinks family history is significant, rather than collecting anecdotal evidence on these threads? I, for instance, have no idea about my own family medical history, having uncles and aunts who died in the '70s - that's the 1870s (my Father died 46 years ago and had 15 older siblings).

I believe the trend of research is towards finding an increasing proportion of renal cancer cases which are inherited so your urologist's cautiousness maybe makes sense. So you may be wise to reckon 'better safe than sorry' and have family members checked as appropriate.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Lisa, Mike has flagged up the CTCA site where there is a vast amount of useful information, including this piece on hereditary aspects of kidney cancer:

http://www.cancercenter.com/cancer-center-news/news/family-affair.cfm

I hope you may find this helpful in giving you a little more background on the question.

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

Lisa,

My father had kidney cancer at age 49; I was diagnosed at age 47. Being diagnosed with kidney cancer before the age of 50 can sometimes point to a genetic factor. Having a family member diagnosed with it also before age 50 increases those odds. I was tested for Von Hippel lindau disease last year because of this. It is only one genetic cause of kidney cancer. I do not have it. I was told that they believe there are most likely other genetic factors that just haven't been discovered yet. My son is 23 and he will also start scans when he is in his mid thirties. Who knows, maybe someday they will find another genetic mutation. I plan on staying vigilant for my own health, my son's health and future research. Great news on your scan!!
Rae

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Lisa,

Congrats on the NED and here is to many many more. There have been various cancers in my family (thankfully all survivors so far), but I am the first with RCC. Oddly, I have known several people with RCC including my father in-law, but no blood relatives.

Rock on,

Gary

rae_rae's picture
rae_rae
Posts: 266
Joined: Oct 2010

I had to jump on the laptop as navigating my smartphone from the comforts of my bed proved to be difficult :)

I have a link also about genetics and kidney cancer. This information was also explained to me by my genetic counselor last September. She said my kidney cancer could be a fluke but most likely not due to our ages and being immediate family. Just because they haven't found the genetic cause doesn't mean there isn't one.

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

Best,

Rae

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

I know they have been doing genetic testing on me as part of my clinical trial. My daughter has already stated that she will watch carefully as she is considered my little clone by my wife. We often have the same aches and pains. My wife rolls her eyes.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Anyway I guess your Wife will be quite content if your Daughter is foxy?

foxhd's picture
foxhd
Posts: 1897
Joined: Oct 2011

They call here "Lttle Larry". Sometimes my wife will have been talking to my daughter and several hours later out of the blue, I'll say the same thing. Or vice-versa. Drives my wife nuts.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Hmmmm, my reply kept going in the wrong place. Oh well. lol Anyway, thanks for the interesting replies. I will check out the links. Thanks again!

Blessings,
Lisa

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, the short answer is that some forms of kidney cancer do run in families and current thinking is that maybe that applies in more cases than the experts had supposed. So you should heed your urologist's advice and have your nearest and dearest get checked out regularly.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Yes, the short answer is that some forms of kidney cancer do run in families and current thinking is that maybe that applies in more cases than the experts had supposed. So you should heed your urologist's advice and have your nearest and dearest get checked out regularly.

Michael6701
Posts: 26
Joined: Sep 2011

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's picture
MikeK703
Posts: 235
Joined: Sep 2010

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

Vagusto's picture
Vagusto
Posts: 86
Joined: Aug 2011

Hi Lisa

I was 46 when diagnosed with kidney cancer. As most, it was caught on accident.
My Father passed 6 years ago from it. Neither his Urologist, or mine said anything
about the possibilities of his children getting it. MY Urologist said that my family doctor
should've been doing regular scans as kidney cancer is hereditary. My two Brothers
have since been in for ultrasounds. I'm encouraging my adult children to also do it.
I sometimes wonder why doctors offices take family history information if they
don't do anything with it.
Valerie

Limelife50's picture
Limelife50
Posts: 411
Joined: Nov 2011

I was 50 years old when I was dx,so I have a question is fifty years consider to be young and if so I have a son who is 21,when would be a good age for my son to start getting checked.

garym's picture
garym
Posts: 1651
Joined: Nov 2009

I was just wondering about that myself, I was 58 at dx just over 2 years ago, my kids are 36, 35, 33, & 30. I think I'll ask my doc at the next checkup and advise my kids to do the same. Seems like a good place to start anyway.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Limelife,

I answered below, but was thinking about your question more. If I were you and I could talk my doctor into testing my son at 21, I would! Particularly because this cancer seems to be so sneaky and the fact that it doesn't seem to show itself until it's almost too late a lot of the times. There are so many of us here where our cancer was found while looking for something else. If I wouldn't have had my diverticulitis attack, who knows how long it might have been before I ever needed a scan? Instead of it being the size of a cherry tomato when they found it, it could have been the size of a miniature football like my Grandfather's. If they will test your son, I'd have it done now. I just feel like better safe then sorry.

Blessings,
Lisa

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
LISAinTN
Posts: 143
Joined: Aug 2011

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's picture
garym
Posts: 1651
Joined: Nov 2009

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

girlypants's picture
girlypants
Posts: 31
Joined: Jan 2012

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
rae_rae
Posts: 266
Joined: Oct 2010

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
Posts: 26
Joined: Sep 2011

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's picture
lawmanmike
Posts: 29
Joined: Jan 2012

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
Posts: 54
Joined: Apr 2010

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's picture
LISAinTN
Posts: 143
Joined: Aug 2011

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

nicmarie75
Posts: 54
Joined: Apr 2010

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's picture
LISAinTN
Posts: 143
Joined: Aug 2011

Nichole,

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

Blessings,
Lisa

nicmarie75
Posts: 54
Joined: Apr 2010

I have not talked to my Dr. about this yet, I am not sure what to ask for? A CT Scan? An Ultrasound? I wanted to be informed before I go to her.

LISAinTN's picture
LISAinTN
Posts: 143
Joined: Aug 2011

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

trishpm
Posts: 22
Joined: Nov 2004

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's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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.

livealive's picture
livealive
Posts: 127
Joined: Feb 2012

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

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

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's picture
livealive
Posts: 127
Joined: Feb 2012

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...

j_rod
Posts: 125
Joined: Mar 2012

.....so I will help you. First, my aunt got kidney cancer when she was 59. She noticed a lump in her side. The doctor took a scan. He said there was a lump (mass). He operated. removed her kidney. The tumor was the size of a baseball. Encapsulated. Cancer. She is 81 now. In excellent health. She works out for an hour a day at the gym on the eliptical. My step-father got bladder/kidney cancer. They removed his kidney/part of his bladder and he did fine....for a while. Then his lung, then his liver. Then brain. My mom, by the time they found her cancer, she was stage 4, so who knows? I know that some forms of kidney cancer are hereditary, but my doctor is very good. He said he will look at the tumor to see if it has the hereditary traits - that way i tell my family to get scanned. I guess there must be something to look for on the tests - right???

j_rod
Posts: 125
Joined: Mar 2012

.....so I will help you. First, my aunt got kidney cancer when she was 59. She noticed a lump in her side. The doctor took a scan. He said there was a lump (mass). He operated. removed her kidney. The tumor was the size of a baseball. Encapsulated. Cancer. She is 81 now. In excellent health. She works out for an hour a day at the gym on the eliptical. My step-father got bladder/kidney cancer. They removed his kidney/part of his bladder and he did fine....for a while. Then his lung, then his liver. Then brain. My mom, by the time they found her cancer, she was stage 4, so who knows? I know that some forms of kidney cancer are hereditary, but my doctor is very good. He said he will look at the tumor to see if it has the hereditary traits - that way i tell my family to get scanned. I guess there must be something to look for on the tests - right???

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