Family Affair

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 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

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

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 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

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

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 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 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.

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.

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, 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.