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BRCA negative, prophylactic bilateral mastectomy

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Poll Question: Are you BRCA negative and chose prophylactic bilateral mastectomy?
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Jennasnyder31 View Drop Down

Joined: Jun 22 2014
Location: Greensburg, PA
Status: Offline
Points: 4
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    Posted: Aug 12 2014 at 6:47pm
I'm trying to decide between bilateral mastectomy or lump w rads. I'm 30 and BRCA negative. I am concerned about the rest of my life and the not knowing what caused this in the first place. What did you choose and why? Did any doctors recommend prophylactic surgery or provide statistics? I can't seem to find any. I know that it's the same for this specific occurrence of bc but what about chances if developing a brand new one or a local recurrence?
Thank you,
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123Donna View Drop Down
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Joined: Aug 24 2009
Location: St. Louis, MO
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Points: 13303
Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Aug 12 2014 at 7:37pm
Hi Jenna,

I think if you search for the studies, they will tell you the statistics are the same whether you choos bi-mx or lumpectomy with rads. I was Stage 1 and lumpectomy was recommended, but I chose bilateral mastectomy. I can't tell you why I did, it just felt like the right decision for me. I was 49, always had dense, fibrocyctic breasts and just worried. My path report after surgery showed precancerous areas in the good breast. It was just a hunch, but don't regret my decision. Even so, I still had a recurrence to an internal mammary node on the opposite side of the tumor. It appears not all cancer cells drain to the sentinel nodes and I was one of them. I think you have to choose what is best for you. You will hear from many of our members who had a lumpectomy and rads and never had a recurrence. It's a deeply personal decision. Wishing you the best.

DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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noordinarymom View Drop Down

Joined: Jul 28 2014
Location: San Diego
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Points: 7
Post Options Post Options   Thanks (0) Thanks(0)   Quote noordinarymom Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2014 at 9:29pm
Many BRCA negative girls choose BMX when the cancer is in only one breast, whether it be for aesthetics or for peace of mind that they won't get it in the other breast. I've read that it's uncommon for cancer to come back in the opposite breast, but I can see how the thought of that happening can overcome you which is why some women choose bilateral mastectomies. Talk to your onco.
DX 2/16/14 Stage 1 1.5cm Grade 3 Node negative, BMX with expanders 3/14/14, AC/T Chemo 4/24/14, Implant exchange scheduled for October
BRCA1+ (187delAG)
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Jacquie View Drop Down

Joined: Oct 21 2017
Location: Liverpool, NY
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Points: 7
Post Options Post Options   Thanks (1) Thanks(1)   Quote Jacquie Quote  Post ReplyReply Direct Link To This Post Posted: Oct 21 2017 at 4:14pm
I was diagnosed withTNBC and my surgeon recommended a lumpectomy with radiation and chemo. I agreed initially because he of course knows what’s best. Well, what is best medically for some is not best for others. The days following that decision I constantly questioned if that was the right choice. I can remember my oncologist saying, you will be fine as long as you make the right decisions. Well, what are the right decisions? And how do I know what choice is right? I called my oldest daughter to tell her that I was going to have a lumpectomy and the surgeon felt confident this was the right surgery choice for me. She cried and cried and I knew immediately at that moment that was not the right choice for me. It immediately became clear. I was questioning it, my children were upset over it, maybe I shouldn’t do that. I changed my mind, told my surgeon and everything and I mean everything was rescheduled. But once I made that decision, I never once questioned it like I did the lumpectomy, not once. I was afraid but I was sure this is what I wanted. I am now 2 was post op and still 100% am sure I made the right choice for me.

My reasons:
1- reconstructive surgery is very difficult and sometimes impose after radiation so if it came back or the dr couldn’t get clean margins and you had to have the mastectomy anyway. Reconstructive surgery may not be an option
2 - I didn’t want to take the chance the cancer would come back in either breast
3- my children wanted me to do the bilateral mastectomy for fear of it coming back
3 - I won’t have to have radiation
4 - I only had to definitely have the only one surgery
5 - with a lumpectomy it is possible to have additional surgeries due to achieving clean margins
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