• From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 682

Topic: Genetic Testing

Hi all,

I was just wondering if anyone else has had genetic testing?  I have two daughters and wanted to have genetic testing so that the had as much information as possible.  I have had breast (17 year survivor), thyroid (12 year survivor) , and cholangiocarcinoma (2 year survivor).  I had genetic tests after my CC diagnosis for BRAC1, BRAC2, Li-Fraumeni, and Cowdens Syndrome and all were negative (yay!)

Just wondering if anyone else had other genetic tests.  The BRA1,2 were for breast/ovarian cancer and the other two were for multiple cancers.

Just curious...
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,225

Re: Genetic Testing

Wow, Randi, you are certainly a poster girl for Cancer. Enough all ready! Wishing for you and your family a much Healthier New Year!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • Registered: Mon, 27 Jun 2011
  • Posts: 435

Re: Genetic Testing

I have never had genetic testing.

Best wishes!

Susie

  • eli
  • eli
  • Legend
  • Offline
  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 562

Re: Genetic Testing

Hi Randi,

We have an appointment in genetic clinic coming up. We got the referral from our oncologist. We want to discuss our daughter's cancer risk. They will do genetic testing if necessary. Don't know what kind of testing.

But I do know this. My wife's boss's wife has breast cancer. **One year** before she got diagnosed she went to genetic clinic. She was concerned about breast cancers in her close family. They ran some genetic tests on her and they all came back negative. They told her to stop worrying. One year later she got diagnosed. Go figure.

Best wishes,
Eli

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 682

Re: Genetic Testing

Yea Lainy, I think (hope) I am done with cancer!

Eli:
From my understanding, negative genetic tests don't mean you won't get something, but it does mean that you won't pass the genetic propensity to your children.  I do not have a family history of breast cancer or thyroid cancer (or CC for that matter), but have had them all.  More people get breast cancer who are not genetically disposed to it then those we are, however, an extremely high percentage of people with the genetic mutation for Breast cancer develop it over their lifetime.

Good luck with the testing.  It is quite an emotional roller coaster getting the tests and results.  In my opinion, you have to understand your goals for getting the test and not hang your hat on them coming back either way (+ or -).  I wasn't sure which I was hoping for, since an explanation would have been nice but then I would have the possibility of passing it along, so should I hope for negative?  I guess I landed on not letting the results change the way I thought about myself.  I didn't do anything to cause these cancers and if I had a defect, that would not have been my fault.  I did get emotional when thinking about 'doing this to my daughters" but the genetic counselor was clear that I was "doing" anything!

I am just curious if there are other tests that people have had. I'll be interested in if/what kinds of tests they recommend.

Happy New Year!
-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.
  • jz
  • Member
  • Offline
  • From: Los Angeles, CA
  • Registered: Fri, 25 Jan 2013
  • Posts: 21

Re: Genetic Testing

Randi, Eli,

I realize this thread is from a while ago, and I hope you are both doing well!

Wanted to follow up on ask which genetic clinics you went to for the testing.  My Dad has a recent recurrence after resection last year and I wanted to send some of his tissue sample for testing in case they can be useful for his treatments.

Thanks much!
Julie

  • Registered: Sat, 28 May 2011
  • Posts: 65

Re: Genetic Testing

Hi JZ...we sent my brother's tissue sample to a lab in Arizona (TargetNow)...and they compiled a pretty extensive report on what treatments would/wouldn't work for him based on tests using his tissue sample.

More info on TargetNow:  http://www.brucehaney.org/site/default. … ;PageID=50

  • From: Hilton, New York
  • Registered: Fri, 15 Jan 2010
  • Posts: 682

Re: Genetic Testing

Hello JZ.  I am doing quite well thank you!

I think genetic testing and tissue sample testing are separate things.  But I am sure someone else will come along and give us some good definitions.

I had blood drawn and it was tested. 

I hope your Dad is doing well.

-Randi-

Survivor of breast cancer (1994), thyroid cancer (1999), cholangiocarcinoma (2009).

My comments, suggestions, and opinions are based only on my personal experience as a cancer survivor. Please consult a physician for professional guidance.

9 Reply by eli (edited by eli Sat, 16 Feb 2013 15:57:05)

  • eli
  • eli
  • Legend
  • Offline
  • From: Ottawa, Ontario, Canada
  • Registered: Tue, 08 Nov 2011
  • Posts: 562

Re: Genetic Testing

Hi JZ,

My wife did genetic testing at the local hospital here in Ottawa. They tested her for a few hereditary genetic mutations that are known to elevate cancer risk in the family (BRCA1, BRCA2, Lynch Syndrome). All tests came back negative. Had the tests been positive, the next step would be to test our daughter, to see if she inherited any mutations from mom. In other words, we did genetic testing NOT for therapeutic purposes but to find out if our daughter is at risk.

I recommend that you have a discussion with your dad's oncologist, before you go any further with tissue tests. Tissue testing is a controversial subject. My understanding is that only a minority of oncologists incorporated tissue testing in their practice.

The following links might be helpful to understand the difference between two different types of tissue testing.

1. Tumor biomarker testing

http://jnci.oxfordjournals.org/content/103/2/84.full

2. Chemo sensitivity testing

http://csn.cancer.org/node/145884
http://accutheranostics.com/index.php/chemofit_assay

Hope this helps.

Best wishes,
Eli

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: Genetic Testing

Eli..thanks.  I just knew that you would chime in on this one.
In re: to chemo sensitive testing (something we did also) the response could only be as good as the availability of drugs available.  In my husband's case, his cells responded to Irinotecan , but he would have never been able to tolerate it. Given the current trend of pathway specific inhibitors, things may look a bit different. Don't know though whether sensitivity testing includes this also. 
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • jz
  • Member
  • Offline
  • From: Los Angeles, CA
  • Registered: Fri, 25 Jan 2013
  • Posts: 21

Re: Genetic Testing

Thank you all for the helpful responses, and the information on this topic.  We are primarily interested in doing the testing to find more information for Dad's treatment, and I haven't really thought about the genetic implications for us kids.  I will look into it more and talk to my Dad's doctors to see what is appropriate.  Thanks!

Julie