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energybunny

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Reply with quote  #1 
Hi All, I am having genetic testing done to check for the BRCA mutations.  I am praying I don't have it, but when I asked my onc about removing my 'good' breast prophylactically (sp?) she said let's do the g. testing first.  Anyway, I go on 6/19 to start the process.  I am kind of worried, but I don't have a family history of cancer other than my paternal gramma dying young of pancreatic cancer.  I am a little scared, but know with 2 daughters I need to do this and for myself, to get onboard about removing r/breast and ovaries asap if needed. 
Any advice on this would be greatly appreciated. Thanks,  Lee

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CarynRose

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Reply with quote  #2 
Lee,

Even though you are seeing your doctor, you should also see a certified genetic counselor when you test.  He/she will be able to give you a lot of advice that doctors don't, usually because they can't spend that much time with you. 

I HIGHLY recommend you visiting http://www.facingourrisk.org.  It is the FORCE website, a place where those wanting information about hereditary cancers can find a wealth of information.

All the best to you,
Caryn

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energybunny

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Reply with quote  #3 

Hi Caryn,  I am having it done at a genetic testing dept through our university so all those questions, etc., will happen, as you suggested, there.  They have already sent me the information to fill out and get to them on my family history, which I might add, does not include much cancer!!!!!   So why me??    Anyway, enough of that, not helpful, so I just want to know if I am BRCA1 or BRCA2 or not.  Does this all make sense?  THanks,  Lee


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energybunny

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Reply with quote  #4 
Going for my g. testing apt. today.  I am nervous, but I am always nervous!!!   If it is so, I will get the other boob removed.   I think I want this done anyway!!!   With stage 3A, I scared out of mind about reoccurance anyway, and although it goes other places than the boobs, isn't this the right thing to do?? 

I have been upset and depressed the last few days and I need to get myself together.  Going up north to a friend's cottage with my family and hopefully that will put me in a different place.  Reading all the posts from you wonderful ladies helps a lot!!  Thanks,  Lee

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energybunny

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Reply with quote  #5 

Hi All,  My test results came back and I do not have the BRCA1 or BRCA2.  That is good for my kids and I think good for me, right?  I had an hour long counseling session and think I understood it all.  -Lee


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MargaretB

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Reply with quote  #6 

Congrats on your test results. I meet with he gentic counselor in a few weeks to determine if I'm going to have the test done.

energybunny

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Reply with quote  #7 
Hi Margaret B.  Good luck to you with the testing.  It was not hard for me to get it done.  I just asked for the referral and got the apt. and had the blood drawn immediately following my apt. with the Genetic Counselor.  It was a very informative meeting and she called me personally with the results.  I have no family history of bc and so I thought I'd get have more trouble pushing for the test, but it was not a problem here.

I also had a nutrionist apt. yesterday and she put me on 1000 mgs. fish oil, 2000 vit. D3, 1-3 tbsp. flax seed (ground, which I was eating it WHOLE before she told me I had to grind it up!!ha!) and my multi vitamin,  7-9 svgs. daily of fruit/veggies (mostly organic), and to maintain my weight w/in 5 lbs. of my weight right now.  Also, to keep up my exercise daily as I've been doing.

I guess that's all there is, and diligent watchfulness on my body.  Good luck to you!!  -Lee

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Indigoblue

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Reply with quote  #8 

Energybunny,
 
Thanks for the information!  Especially about the nutritional advice.  I visited with Oncologists, Neurologists, and Bone Man, all gave me a similar list of nutritional and supplemental advice and a list of gentle exercises to follow.  I even saw a Physical Therapist who (wow!) gave me some suggestions on how to keep a healthy body without starving myself or risking physical "damage" to the bones, muscles and joints.  She suggested, recommended (demanded, in a way), a sensible diet,  gentle exercises, go swimming, and walk, short distances, and to mix-up the routine. 
 
Thanks for the inspiration!
 
love,
Indi

Oh, I forgot to mention, I am also having the BRCA Genetic Test, as well as meeting with a new surgeon.  It's all a little overwhelming and confusing at the moment; considering, I've already had the surgery, the chemo, the rads, etc.  I don't know where it's going, but it has to be better than "not knowing".  I've been kept in the "dark" until now, and knowing is believing.  I would rather "know" what is going on with this stuff; I have no children, but I have sisters, cousins, neices, nephews, and relatives who might want to know the possible genetic make-up to watch out for in their future lives (or not).
It's their decision.  In my case, there could be some changes and possible varable outcomes in changing the entire game-plan.  I thought about it and decided, thanks to you and many others, there is no excuse for ignorance, unless ofcourse, a patient prefers to "not know" the truth. 
 
((((((hugs)))))))
 
Indi


energybunny

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Reply with quote  #9 
Indi,  Good for you!  WHen I saw you addressing me, I thought WOW!  She answered one of MY posts!!      It looks like in this world of bc, we have to follow our paths and address the issues as they come to light for each of us in our time.  Best wishes to you on meeting the people you have in your next appts and may they be as gracious and wonderful as the ones that I met!

Keep up the good work!  Hugs back to you!  Lee (Energybunny)

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