Topic: wating

Forum: Genetic Testing — ATM, BARD1, BRCA1, BRCA2, BRIP1, CDH1, CHEK2, NBN, NF1, PALB2, PTEN, RAD51C, RAD51D, STK11, TP53, mismatch repair genes (MLH1, MSH2, MSH6, PMS2, EPCAM), and VUS (variants of unknown significance)

Posted on: Apr 29, 2010 02:12PM

Posted on: Apr 29, 2010 02:12PM

suz90 wrote:

I am brand new here although i had BC 9 yrs ago. i have never had the genetic testing. i was really afraid. but since BC i have had 2 kids and i am 45 and it's time to find out. i do not have much family history of BC - the main reason they are concerned that i am a BRCA carrier is that i was 36 and i was neg to estrogen. they throw a lot of stats at me and it's confusing. i am preparing myself. not sure what to do. i am considering having my ovaries removed but i am confused. i find out results on may 12th. i don't want to stress but hard not to.

Dx 11/2/2000, <1cm, Stage I, Grade 3, 0/18 nodes, ER-
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Apr 29, 2010 02:52PM Carlatap wrote:

I know, the waiting is the worst part. I really hope you test negative. Then you can move on. Its a good sign that you haven't had BC since 2000. My 2nd time around showed up 7 years later.

Take care,

Carla 

Carla Dx 3/9/2009, IDC, 1cm, Stage I, Grade 3, 0/2 nodes, ER-/PR-, HER2-
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Apr 29, 2010 02:57PM suz90 wrote:

thank you Carla!

Suzanne

Dx 11/2/2000, <1cm, Stage I, Grade 3, 0/18 nodes, ER-
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May 1, 2010 12:12PM AnacortesGirl wrote:

Not having any family history is a very good sign that the tests will show up negative.  I'm hoping for negative results on the 12th!  Let us know.

Christy - BRCA2+; mets to bones and liver, Taxol/Sutent -> AC, BMX - no recon, Rads, Carboplatin, BSO, Veliparib trial (8/30/13-3/13/14) Dx 7/21/2009, ILC, 5cm, Stage IIIC, Grade 3, 14/17 nodes, ER+/PR+, HER2- Hormonal Therapy 9/1/2010 Aromasin (exemestane) Hormonal Therapy 2/1/2011 Dx 9/9/2012, ILC, Stage IV, Grade 3, ER+/PR-, HER2- Hormonal Therapy 9/9/2012 Femara (letrozole) Chemotherapy 3/29/2013 Xeloda (capecitabine) Hormonal Therapy 8/16/2013 Faslodex (fulvestrant) Chemotherapy 3/20/2014 Carboplatin (Paraplatin)
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May 12, 2010 12:15PM suz90 wrote:

Not sure how to navigate this...i got my results for the BRCA mutation and it was negative - PHEW! but...she only tested my for 3 mutations for eastern european jews. should i also get the sequencing? it is very expensive and more stress. Genetic wants me to even though it is very unlikely they will find anything. so confused! is it enough? when is it enough? the big factor is that i had BC very early (36) and this is why she wants me to do more. otherwise not a strong family history although not much to base it on.

Dx 11/2/2000, <1cm, Stage I, Grade 3, 0/18 nodes, ER-
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May 12, 2010 01:17PM kittycat wrote:

I don't know about the Eastern European Jew mutations.  What's that all about?  I am not of Jewish descent that I know of.  My family is mainly from Scotland, Ireland and Wales.  My Great Grandmother had BC and she was half American Indian (Cherokee) and half caucasian.  My aunt on the other side of my family is Scottish and had BC, too.  I don't know which side my BRCA1 came from, but my sister has the same mutation.  I learned on the FORCE website that our particular mutation goes back to the Scotland area.  Both sides of our family is from that area, but my Great Grandfather on my mom's side was born in Scotland. 

2 time survivor of triple negative BC, postiive for BRCA1 gene mutation! 9 surgeries, 5 months of chemo and 6 weeks of radiation. Dx 6/17/2009, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER-/PR-, HER2- Dx 4/30/2010, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER-/PR-, HER2- Chemotherapy 6/16/2010 AC + T (Taxol) Radiation Therapy 11/15/2010
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May 12, 2010 02:25PM suz90 wrote:

thanks for the info. it's so confusing and involved. it looks like you have been through a lot - I hope you're doing okay? i am going to check out FORCE. you're right this disease does SUCK. best, Suzanne

Dx 11/2/2000, <1cm, Stage I, Grade 3, 0/18 nodes, ER-
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May 13, 2010 02:57AM kittycat wrote:

Yeah, there's a whole thread on specific BRCA mutations on FORCE.  I'm doing okay. Just trying to make it through one day at a time!  :)

2 time survivor of triple negative BC, postiive for BRCA1 gene mutation! 9 surgeries, 5 months of chemo and 6 weeks of radiation. Dx 6/17/2009, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER-/PR-, HER2- Dx 4/30/2010, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER-/PR-, HER2- Chemotherapy 6/16/2010 AC + T (Taxol) Radiation Therapy 11/15/2010
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May 13, 2010 10:13AM - edited May 13, 2010 10:14AM by Mutd

"a whole thread on specific BRCA mutations on FORCE" ... I used to be active there but was told by the admin of the forum to keep out. They don't want the discussion of the mutations to go too deep. It's like, if you want to know where the mutation came from or how it works, they want you to go to the certified professionals. Even something as simple as sharing the google search results may be off limits now. Sharing personal stories, that's still fine, but the discussion kind of died down now, after some folks have been warned or banned outright, and some posts about mutations deleted from the FORCE forums.

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May 16, 2010 04:16AM kittycat wrote:

Mutd - yes, here is the link to that thread:  http://www.facingourrisk.org/messageboard/viewforum.php?f=311

Or if you go the message board, it's under "Post your specific mutation"  It's pretty cool because there are a few people on there that have my mutation.  Their board isn't as active as BCO, but the information is interesting for those of us that are BRCA +.

2 time survivor of triple negative BC, postiive for BRCA1 gene mutation! 9 surgeries, 5 months of chemo and 6 weeks of radiation. Dx 6/17/2009, DCIS, <1cm, Stage 0, Grade 2, 0/0 nodes, ER-/PR-, HER2- Dx 4/30/2010, IDC, <1cm, Stage I, Grade 3, 0/10 nodes, ER-/PR-, HER2- Chemotherapy 6/16/2010 AC + T (Taxol) Radiation Therapy 11/15/2010

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