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Genetic testing


chloesmom

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I have been talked to by most of my physicians about getting genetic testing. This is due to a couple of things--two separate cancers for me at a relatively young age-45 and 47, and two sisters who have had cancer-one had leukemia and the other had early stage breast cancer.

My lung surgeon is very in favor, my onc thinks it's a good idea, and so does my gynecologist and my internist. But, here's the thing. I know knowledge is power, but I don't know how it would sit with my emotionally to test positive for the BRCA1 or BRCA2 mutation.

My lung surgeon, from the University of Chicago, would like to even go a step further and have me see genetic counselor, who might recommend all other kinds of testing to see what I might be prone to in terms of disease.

Those of you who know me remember that there was a time that I couldn't even work for a couple of weeks because of anxiety preceding a scan/visit to my lung surgeon, so I just don't know what I'd do with that information.

Yet, I wonder why I am reluctant to get all the ammunition I can to fight off another bout with any kind of cancer. I just don't really know what to do.

They tell me that if I were to test positive, increased surveillance would be a potential plan, such as MRI every year, etc. I would not have to have any surgical procedures-that would all be my choice.

So, my question is, have any of you been considering this kind of testing, and if you have what do you think?

Cindy

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I took the BRCA test two years ago.

For me, I needed to know because of ovarian and breast cancer on my dad's side of the family add lung cancer in the mix and I'm just sitting here waiting for the axe to fall...

Because there is no early detection for lung cancer...I figured at least this knowledge IS power and if there is anyway I would know if I am predisposed to a certain cancer---that's power...and I've got a tiny bit on control in an otherwise uncontrollable situation.

I tested negative for the BRCA i and ii, but I did have a "variant of unknown mutation of a gene."

At the time it was explained to me that the science didn't know what this gene was...it could be a mutation of a cancer gene or it could be nothing...SO...for almost an entire year I knew I had someting but I didn't know what...

Then one day I got a letter that the gene had been identified and it was not a cancer causing gene. YAY me.

If there was a definitive lung cancer genetic test I would take, I would take it.

It's all about having some control over your medical path...and if there's someway to catch whatever it is early by being more vigilant, I'm all for it.

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I'm not looking at needing the BRCA gene testing, but for my own situation (have had some weird tumor-related health concerns here lately) I'm getting some genetic testing done in just a couple of weeks.

I so very much understand the anxiety that you're talking about. The testing I'm doing wouldn't come with surgical options right up front it would be just more for surveillance purposes. For me, I want to know what I need to be looking for in the future. I want a reason for doctors to be looking so that things can be caught early. And I want to know what the implications might be for my kids and their kids and my family so that we all know to be vigilant. As overwhelming as looking at THAT picture is, I feel like I have a duty to them to find out what I've gotten us all into and what we can do to counteract it.

For me, I want to be able to DO something. Learning more about what might come my way so that I can DO something about it is my way of feeling like I have a little control in an uncontrollable situation (just reread and say that Katie said the same thing).

On the other hand, I do know of people who know that the anxiety of knowing and wondering what the implications of the findings might be would undo them and they do forego the testing.

I'm also nervous about insurance implications... But most of me still says: I want to know.

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I had it done awhile ago b/c one grandmother had breast and one ovarian. Also there is a Jewish component to the genetic testing. I was negative. I think it is a good idea to increase your surviellance if tested positive as early detection is key and knowledge is power. I get breast MRIs, they are great for detection!

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Cindy,

I have been thinking about getting genetic testing done also. Mainly because my Father died on esophageal cancer at age 69 (non smoker, non drinker), his mother died of lung cancer in her your 60's I was only 2 years old and now I have lung cancer. I am deeply concerned for my daughter. So if there is a chance they could determine whether she has a hereditary gene and she could be watched closely then I feel for me it would be beneficial to have it done. I am going to talk to my Onc. when I go in March.

It is a personal decision whether you get the testing done. I am the same as you and become unfunctional at times with the anxiety, so I can really relate to not wanting to go through that.

Libby

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