Genetic Testing - Will it even matter??? (pros/cons)

[SlobberDog]

Hi everyone,

My blood was drawn more than a month ago on 11/27, for the HNPCC genetic test, and sent to Myriad. I think Myriad is the only company doing this particular test now. (not sure though)

The runaround begins: First the paperwork, the "orders" sent in w/the blood sample were incorrect, so the process was delayed 10+ days. A rep at Myriad told me that once they got the correct "orders" from the doctor, it generally would take one week for Coventry to give a "YAY" or a "NAY" to pay for the test.

As of today, still nothing has been done... supposedly Coventry asked the doc's office for more information (to justify the test) on 12/14... two freaking damn weeks ago - and that has not been fixed. I'm making phone calls, sending emails, begging/pleading/being firm and demanding - all of the above - and getting more and more pissed off... at the doctor's office mostly (and insurance too though.)

Do I even want or need this test? What DIFFERENCE will it even make? We clearly do not have $2000 ourselves to pay for this, but we could perhaps charge it on a credit card if desperate enough.

I think if I tested POSITIVE for the gene, then clearly I would demand more frequent (maybe yearly) c-scopes, regardless of symptoms or problems. I would also be more inclined to change my lifestyle, diet, drinking habits, etc. If polyps or anything malignant was ever found, I would probably opt for much more aggressive treatment or surgery. But if I test NEGATIVE, does that really mean I am at "less" risk... with my family history? My dad Dx at age 48, dead by age 52; his mother died in her 50's of stomach/colon cancer...

I'm frustrated. Back on 11/27 I fully expected to have at least "some" answers by the end of 2006. Even if Coventry is going to deny the test - I'd rather just KNOW, and know RIGHT NOW.

Any suggestions on the value, or benefit, of knowing the genetic test results? Or the negative aspects of being tested?

Thank you for letting me vent.
Michelle

[Holly]

Michelle,

Send me a private message with your email address and I will send you 2 contacts I have at Myriad that can help you with processing your paperwork and expediting your test results!

My holiday gift to you!

Holly

[ASTEPHENS33]

I went ahead and also did the genetic testing and am waiting for the results. I am in my mid-50s. I felt it was important to be able to provide better guidelines for my family.

[Holly]

Michelle,

You are welcome. I have sent you an email. If there is anything else that I may do to further assist you, please do not hesitate to let me know.

Always,

Holly

[CBLACK]

I was wondering the same thing. Does the genetic testing really benefit you? I have heard of people losing health insurance and having problems with life insurance. If someone has the nonpolyps kind of colon cancer are there any different tests they can do? My husband's doctor already plans to give him routine colonoscopies on a yearly basis, regardless. Right now the testing doesn't make sense to me.

[pjpeace]

I know they plan on doing genetic testing on me too. i'd rather get it done even though i don't have a family history of colon cancer but i would like to know. There's been other cancer in my family though.

The lady at IU was great about explaining the benefits of it. It's good because for example when you go to your gyno there maybe more tests that they will give you rather than just the regualar stuff so things can be caught earlier. I think it's more so that stuff can be caught earlier. We all know the earlier it's caught the better it is!

Hope that makes you guys feel a little better!
Paula

[SlobberDog]

Thank you all so much for the replies and thoughts. And thank you Holly, for the email information! Excellent!

Paula, good point about "other" body systems that might need a closer eye on them in the future... makes sense. And of course if I *did* test positive, we would definitely want my sister to have the test, and possibly her daughter (only 22 months old now, but still...).

CBLACK, what I read, I think from the actual Myriad website - regarding discrimination, etc - was that the ONLY thing your insurance company would know is that you actually HAD the test, and asked them to pay for it, or part of it. From the way I understood it, the insurance co. would NOT have any access at ALL to the actual results of the test... only YOU and YOUR doctor would have those. Do I feel 100% safe with that idea? Not really... but I've already been "turned down" for health insurance before due to my health history - colitis and multiple c-scopes, and some "female" troubles - other "minor" stuff - so I figured, what the hey. A year ago my husband was laid off suddenly and we were cut off from the insurance (no COBRA because the business went bankrupt) - and we had to apply for this separate, special policy - and we were denied by both Blue Cross and Coventry, because of MY health "problems." So screw them... I figured we'd take the chance with the genetic test results being totally private. I'm self-employed so rely on hubby's job's insurance coverage...

(BTW, my husband got a new job 10 weeks later and health insurance came included, so I did wind up with coverage via Coventry... even though they had denied me as an "individual" policy...)

From the way the Myriad brochure explains the different genetic colon tests, there IS only the one for HNPPC, called "Colaris." I can find it online if you'd like and post the link... I'm sure the same brochure information is on their website. The other test is the "Colaris AP" which is for "FAP"... the genetic version where you have hundreds of polyps, usually beginning at a younger age. It looks like there are different "levels" of each test, depending on if you are the first one in your family to be tested or not. And if one family member tests positive and then other family members get the test, their tests cost much less! Bonus!

ASTEPHENS33, was your test through Myriad? How long is your wait for results, once the test is actually started? Is it really 4-6 weeks? That just seems so long... though I understand that for the more "comprehensive" test it simply takes that long for them to process it...

Thanks again everyone - have a great holiday weekend!
Michelle

[Holly]

Michelle,

For more information, you can visit www.myriadtests.com.

AStephens33, Did I not send you a DVD from Myriad on genetic testing? If so, maybe Michelle could loan it from you. I am all out of my DVD copies.

Michelle, the tests typically take 4-8 weeks for final results. Not to worry. On Tuesday, contact Tric and she will be able to help you. She Rocks!

Hope this helps!

Holly

[northern lights]

Hello everyone,

I had the genetic testing done, and this is what I was told and what has happened since. I am adopted and had no family knowledge, so I wanted the test to protect my children. In Canada, it takes about a year for the results. I was told to make sure I had life insurance, because it would be difficult afterwards if there was a positive finding.

The children would not be tested until they are 18.

As a woman, I would be at increased risk for endometrial (20-60%) and ovarian(10-20%) cancer. (very important for the women in the family) I have since had a hysterectomy after docs found a huge cyst on an ovary. I have completed my family and just don't want to face the risk in the future

Colon Cancer occurs in approsx 3-5% of the population and approx 5% of colon cancer is due to Lynch Syndrome.

Also here is a link for more info.

http://www.mayoclinic.org/hnp-colon-cancer/


Sharon

[ASTEPHENS33]

You asked: ASTEPHENS33, was your test through Myriad? How long is your wait for results, once the test is actually started? Is it really 4-6 weeks? That just seems so long... though I understand that for the more "comprehensive" test it simply takes that long for them to process it...

The blood was taken at the onocolgy center where I had my chemotherapy on November 16, 2006, and sent to Myriad. The results are not back yet and I was told it could take about 6 weeks. I was told the cost was $2500, which my insurance company is covering. As I understand it, this genetic testing is for the genes they know about.

One additional note, although I haven't gotten the results back yet, the oncologist (based on family history) felt there was a genetic link and one suggestion was to make sure I had an upper endoscopy, where they go down through your throat. They especially wanted to check out where the stomach and colon meet (a colonoscopy can't see this). As it turns out, the same doctor that does colonscopies, do upper endoscopies and from other people found out you can have them done at the same time. (I did have an upper endoscopy and all was fine.)