Author Topic: BRCA testing...have you had it? I'll get the results tomorrow....  (Read 2184 times)

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SamiHami

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My MD is having me tested for the BRCA gene, since I have such a strong history of cancer in my family. I won't know for 3 weeks whether or not it's positive. If it is positive, I'll have some serious decisions to make. I'm curious who else has had experience with this and and what decisions were made and the reasons for them. If positive it will open up a whole Pandora's box of potential healthcare issues to consider.

Of course, it could well be negative and this could all be moot, but I can't help but wonder/obsess a little about it until I know for sure.
« Last Edit: August 26, 2013, 02:04:51 PM by SamiHami »

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Hmmmmm

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I had the text a few years back. My GM had breast cancer and my mom ovarian. I don't carry the gene.

I'm not sure I would have taken any major actions had the result shown I was a carrier. I think I probably would have just gone in for twice annual screenings instead of annual. 

So instead I'm figuring I need to focus on one of the 5 other types of cancers my mom or my GP's had. :-\

SamiHami

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My doctor told me that if I am positive, that she wants to immediately remove my ovaries. I need to have one removed anyway, for an unrelated reason, so I am probably okay with that (I'm well past the age where fertility is of concern). Beyond that, I don't know.

What have you got? Is it food? Is it for me? I want it whatever it is!

oogyda

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 I am seriously considering the test.  My GM had ovarian cancer.  I recently had a needle biopsy on mg breasf that showed abnormal (but not cancerous) celss. This was followed by a surgical biopsy. I'm in the clear, but had the time and good reason to think about those very questions.

My plan of attack would be to remove the ovaries, remove the breasts and rebuild them.  I'm still uncertain what type of reconstruction I would chose. 

It's not what we gather along the way that matters.  It's what we scatter.

joraemi

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I don't know if you just didn't mention it, but you really need to have genetic counseling in conjunction with this testing. 

I was tested back in 2005 as was my aunt, who is my only living relative on that side of the family where we have all the cancers (and she had breast cancer prior to age 50).  We were both negative.  However, my genetic counselor says BRCA only accounts for 90% of hereditary breast and ovarian cancers.  Because of the way our cancers are clustered in the family and the types, we are considered to be part of the other 10%, and the recommendations are the same for us as someone who is BRCA positive.  SO - for us, testing was only in hopes of identifying the mutation so that other members of the family could be tested and know if they inherited it or not.  SO - to get to the point - I had my ovaries and uterus removed in 2005.  I did not have prophylactic mastectomy, but am vigilant about screening and if I ever have a breast cancer will have a bilateral procedure at that time.  My aunt who was tested is currently dying from her second occurence - this time a stage 4 triple negative breast cancer.

There is a fantastic website out there dedicated exclusively to this topic - not sure if I am allowed to post it here?

Best of luck.  {{HUGS}}




Courage is the price life  exacts for granting peace.  ~Amelia Earhart~

SamiHami

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Joraemi, would you IM me the website? I'd be very interested in reading it.

And that is probably very good advice. Breast and ovarian cancer are on both sides of family, with a few other types, as well (stomach, pancreatic, bone...), so it's something I've always been aware of and always been vigilant about. So, even if my test is negative, I will have to give your advice serious consideration.

What have you got? Is it food? Is it for me? I want it whatever it is!

afbluebelle

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My whole family has had cancer (at least it seems that way). I'm not exactly sure how to get tested for the gene, but I hope to soon.


Not sure what I'll do with the information, but depending on a positive outcome (my mother and all paternal females are positive, so I'm pretty sure I'm positive), I'll probably look into removal of whatever they can that won't screw me up too bad hormonally.

Any chance I could get that link as well?
My inner (r-word) is having a field day with this one.
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Elisabunny

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I am seriously considering the test.  My GM had ovarian cancer.  I recently had a needle biopsy on mg breasf that showed abnormal (but not cancerous) celss. This was followed by a surgical biopsy. I'm in the clear, but had the time and good reason to think about those very questions.

My plan of attack would be to remove the ovaries, remove the breasts and rebuild them.  I'm still uncertain what type of reconstruction I would chose.

There is a lot of ovarian cancer in my husband's family.  His sisters were actually advised NOT to remove their ovaries preemptively, something about it popping up in other parts of the body instead.

My children, and so me by extension, are being tested to find out the pathway for their Fanconi anemia.  The BRCA genes are a possibility.
You must remember this: a ghoti is still a fish...

DollyPond

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The good news is that since the Supreme Court's decision on gene patents you will have the option of having your testing done at several labs other than Myriad Genetics where the test is very expensive.

Ask your doctor to shop around for the best cost and performance options.

Not putting in a sales pitch for the lab where I work.  We don't offer the test yet but have plans to offer it in the future.

Danika

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In 2007, I got pregnant for the first time, and during pregnancy I started having constant excruciating breast pain. Bilateral. I was told it would go away once the baby was born. It never has, although since 2010 it now waivers between constant extreme pain and constant moderate pain.

I've seen 22 doctors now and no one has heard of what I have and there's been no diagnosis. I elected to have a breast reduction in 2008 which didn't stop the pain either.

There is ovarian, cervical and prostate cancer on one side of my family and breast cancer on the other (although, that was later in my mother's life, so not indicative of it being genetic). I was tested for the BRCA gene. I planned that if it were positive, I would have a double mastectomy and end my constant pain.

In my case, it was negative. But I, unfortunately, have had a lot of time to think about how vital breasts are not. My life and my happiness are more important to me than them. I did a lot of research and couldn't get a lot of answers. Many places on the internet indicated that they do end up damaging and/or removing some muscle as well and that weakens your arms, etc. If I had constant pain in a body part that I actually used and really needed like a foot or a hand, I'd still consider having that body part removed. To me, my breasts have always been a burden, when they were huge and I was a young woman, and in recent years because of the constant pain.

I would have elected the double mastectomy had I gotten a positive result, and I am still interested in that because of my constant pain, but insurance won't pay for it because it's not a proven health risk to me.

SamiHami

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I'm a nervous wreck. I find out tomorrow if I have the gene. I don't think I'm going to sleep much tonight; to many awful scenarios are running through my head.

What have you got? Is it food? Is it for me? I want it whatever it is!

Danika

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Re: BRCA testing...have you had it? I'll get the results tomorrow....
« Reply #11 on: August 26, 2013, 03:25:07 PM »
Hugs

SamiHami

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Re: BRCA testing...have you had it? I'll get the results tomorrow....
« Reply #12 on: August 26, 2013, 03:53:29 PM »
Oh, and last week the lab that was doing the testing called my Dr's office wanting to know why all the people on my list of family members with breast/ovarian cancer weren't being tested. It's because they are all dead. It kinda freaked me out a little...I mean, if the lab is calling my Dr's office like that, then it must be positive? Right?

Also, the lady at my Dr's office said they've never received a call like that from the lab before. So, now I'm really nervous about all this...

What have you got? Is it food? Is it for me? I want it whatever it is!

Danika

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Re: BRCA testing...have you had it? I'll get the results tomorrow....
« Reply #13 on: August 26, 2013, 04:15:25 PM »
Oh, and last week the lab that was doing the testing called my Dr's office wanting to know why all the people on my list of family members with breast/ovarian cancer weren't being tested. It's because they are all dead. It kinda freaked me out a little...I mean, if the lab is calling my Dr's office like that, then it must be positive? Right?

Also, the lady at my Dr's office said they've never received a call like that from the lab before. So, now I'm really nervous about all this...

I would think that as soon as they had the results they would call you, not start asking questions about your relatives. The question is legit - why wouldn't others get tested. Of course, they don't know those folks aren't still alive.

Another thing, you know, is that you could be negative for the BRCA genes (there are a few versions of that, IIRC) but it's still in your family for other reasons - environmental or other genes that the scientific community hasn't identified yet. The lab probably just wants to gather more data.

SamiHami

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Re: BRCA testing...have you had it? I'll get the results tomorrow....
« Reply #14 on: August 26, 2013, 04:59:14 PM »
I know you are probably right, but until I see my MD tomorrow I'm afraid I'm going to have all kinds of worst case scenarios going through my head...I wish I could stop myself from worrying so much but I am finding it difficult to distract myself.

What have you got? Is it food? Is it for me? I want it whatever it is!