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Newbie BRCA 1 considering prophylactic mastectomy

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Smiley View Drop Down
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    Posted: Jul 07 2009 at 8:06pm
Hi everyone,
This is my first post....
I am 33 and have just been advised I have the BRCA 1 gene mutation. My mother actually died at age 37 (diagnosed at 33yrs) of breast cancer and my sister was diagnosed 18 months ago (aged 34 yrs).
 
Anyway I am looking for help, support and advice with a bilateral prophylactic (preventative) mastectomy. I am still at university and do not have children yet so there are multiple things I have to think about (money being a big one).
 
Basically because I dont have cancer (yet?) I fall through the cracks. Any surgery I have is called "cosmetic" (as if it is the same as considering to have a boob job etc). I also dont know who are good surgeons etc and who in Perth might perform TRAM/DIEP surgery as I dont want to lose weakness in my arms etc
 
Sorry I have so many questions and no one to ask...
Thanks Lis
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 07 2009 at 9:25pm
Dear Lis,

Welcome!!!!!!! sorry you have reason to be here but glad you found us.

I am deeply sorry about the loss of your mother when you were so young
and sorry for your sister's dx of breast cancer at such a young age..

Recently someone else from Perth posted here in the Talk forum..
title is "Just seen the onc" by Frenchie...I bumped it up for you..

I have the BRCA1+ mutation and passed it on to my daughter..she was dx with TNBC at the age of 36.

I have been posting actively on another website for the last 4+ years called FORCE Facing Our Risk of Cancer Empowered. website is-

www.facingourrisk.org

try to navigate your way around the board there is a lot of good info re BRCA and the women there are terrific as they are here. I post as steve on that site, as well..they created a term called previvor for someone like yourself who wants to do prophylactic surgeries...as I would imagine you know your risk of breast cancer is approx 80-85%. and also most BRCA1+ breast cancer is TN.

There are a number of very nice women from Australia on the FORCE site as you can see in the post I referenced above.

I would suggest you purchase "The Breast Reconstruction Handbook" by my friend Kathy Steligo. I am pretty sure you can find it on Amazon..

For whatever it's worth I think it is wise for you to have the risk-reducing surgery because the odds of getting breast cancer are so horrific. But that is my personal opinion..please do not take it as medical advice. I am not a doc, just a BRCA1+ dad whose daughter had cancer..My daughter after having a quadrantectomy was found to be BRCA1+, as am I. She then had a PBM.

Have you seen a genetic counselor?

I don't know what the surgery options are in Perth..maybe you could post on FORCE?

if I can be of any help please send me a PM.

I am very sorry you have this mutation...but "knowledge is power."

I believe you have the ability to greatly reduce your risks..

good luck to you..

all the best,

Steve



Edited by steve - Jul 07 2009 at 9:26pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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p.s. there have been some more replies on the FORCE thread-

http://www.facingourrisk.org/messageboard/viewtopic.php?t=3216

if you go to the FORCE link in the previous post and then go to community and then message board you can log on as Smiley or whatever name you choose..

I would suggest you post on the thread...shown above

it's entitled

"calling all Aussies..anyone know good oncologist in Perth?"

I believe you will get a warm welcome and it seems several women from Perth are already reading this thread..

good luck to you..

and again, I am deeply sorry for you and your sister's loss and her breast cancer diagnosis.

I hate the BRCA mutation and cancer with an intensity that is so deep that sometimes it scares me.

if you need help navigating the FORCE site please send me PM..happy to help..

all the best,

Steve

Edited by steve - Jul 07 2009 at 9:46pm
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Smiley View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Smiley Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2009 at 1:35am
Thanks Steve I will go have a look now!
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Cheers Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2009 at 10:32am
Welcome Smiley,
 
I to am very sorry to read of your mother's passing and the diagnosis of your sister.
 
Having this mutation knowledge is so important.  Steve has given you wonderful advise and direction, I wish you all the best.
Stage 2 2003
Stage 1 2007
BRCA 1+
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NancyJane View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NancyJane Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2009 at 4:41pm
Hi Smiley:
I too am BRCA 1 positive.  Steve has given you a ton of good info.  I just wanted to say that I found a great deal of my answers on the FORCE web site.  I know my case is different as I was diagnosed with cancer before I tested for the gene mutation.  I had a lumpectomy, however, before my BRCA results came back. Consequently, I had a bilateral prophylactic mastectomy and reconstruction.
 
  Women on the FORCE site and here were very helpful and generous with their advice and support.  Feel free to PM me (private messager button located at the top of the page) if you would like to chat about specifics. Best of luck to you.
Nancy Jane 
 
 
41yr dx 7/25/08
Lumpectomy and ax node disection (38 nodes, all clean!) 8/12/08
T2 grd 3, N0, TN IDC
BRCA1+
ACx4,Tx12 10/08-3/09
prophylactic hyst, ooph,mast & one-step recon 3/30/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Smiley Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2009 at 5:24pm
Thanks Nancy Jane,
I posted on the FORCE website asking about other BRCA 1 Aussie's but have not had any replies yet (felt a bit alone) so looks like I might repost asking for advice from you guys over in the US.
I will investigate some of the sugery options and later might take u or Steve up on the PM once I have a bit more info (good to know someone is listening).
Thanks again Lisa
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Raine Quote  Post ReplyReply Direct Link To This Post Posted: Jul 09 2009 at 6:19pm
Hi Smiley

Sorry you have so many hard decisions to make especially as you have not had a family yet.

Have sent you a PM

Raine
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Dx Jan 1997 Medullary,6/14 nodes Lumpectomy, Rads & 6xAC
Dx July 2006 IDC, 29/34 nodes, Mastectomy, 4xFEC and 6xTaxol, Rads
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2009 at 6:35pm
Dear Lisa,

good luck with your meeting today..

all the best,

Steve
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmayes Quote  Post ReplyReply Direct Link To This Post Posted: Jul 12 2009 at 6:46pm
Hi Smiley,
 
Have you also tried the Aussie BC site
 
http://www.bcaus.org.au/forum/index.php?sid=2e746d9bbb4b7565e0641064577339c0  There are a few good ladies here that have helped me out - good luck  :)
 
Debs
Debs | Laugh every day, Love every minute.
Dx Mar09 - LB IDC 4.5cm - 0 nodes. BRCA -
Cytoxin/Taxotere x4 end Jul09.
ReCon surgery March10.
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