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Genetics, Cancer, and our kids

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

I am just curious how others handle this: Talking to your children about the specific risk of cancer. As I have posted before, on April 30, a CT Scan checking for the cause of my abdominal pain (cause was probably gas) found a 6 cm mass on my right kidney. The kidney and tumor were removed 6 weeks later, and it was a Stage 1B grade 4 Clear Cell. From a cancer perspective, I seem to be cured.

Because my father, grandfather, and great grandmother, and great aunt (grandfathers sister) all had kidney cancer, I assume there is a genetic component. I went to a genetic counselor, and she ran some tests for a few genetic mutations that correlate to Kidney cancer (Von Hippel and one other one). I am awaiting the results. Because the breast cancer mutation runs in the family (my sister has the BRCA1 mutation, but had surgery to minimize the risk. BRCA1 seems to be unrelated to Kidney Cancer (and my family history shows that BRCA1 probably came through my father from his mother, the Kidney cancer through his father).

Here is my question. Clearly, my 10 year old daughter will require genetic testing at the appropriate age. But, regardless of the results, she will need enhanced screening. My biggest concern is if something happens to me, I am not sure my wife will talk to my daughter about this -- she tends to forget important things. How do others handle this issue?

vittoria01's picture
vittoria01
Posts: 23
Joined: Jul 2012

I enclose a link that can be interesting.
www.hlrccinfo.org

matchframe
Posts: 58
Joined: May 2012

I had a partial nephrectomy last Fall and this was the exact question I had for my Doctor. My son is 21 and daughter is 19. My Doctor told me that kidney cancer is environmental, not hereditary. I have since heard from other sources that to not totally the case however, but I put more stock in my Doctor who is the leading kidney doctor at MD Anderson here in Houston.

My Mom had breast, spinal and cranial cancer in the early 1970's and has been cancer free since then. Since I had kidney cancer, both of my brothers were evaluated for cancer and were declared free of cancer. I would like for my kids to be evaluated when they can just to be sure.

If something did happen to you, is there another family member who you can express your concerns? Maybe they will be there for your daughter when she needs the genetic screening.

dhs1963's picture
dhs1963
Posts: 359
Joined: May 2012

The question is not did anyone else have cancer, it is did anyone else have Kidney cancer.

In my case, my dad, grandfather and great grandmother all had it. That means it is almost certainly a genetic component.

on average, people have a 1% chance of developing RCC. For you and your parent, it is 0.01x0.01, or 1 in 10,000. At the grandfather into the mix, and it is 1 in a million. one more generation, and it is 1 in 100 million -- assuming it is random or environmental.

If it is genetic, the odds of the mutation are .5 x .5 x .5 or 12.5% of this history.

So, if no ancestors had it, you probably do not need to worry.

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

I've told my 4 adult children that since their maternal grandfather and now their father both had RCC they should talk to their regular doctor about it and consider a baseline ultrasound and follow-up every 3 to 5 years. Better safe than sorry I figure.

Gary

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