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puakai View Drop Down
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    Posted: May 14 2013 at 12:11am
Hi everyone!  It's been awhile since I posted so I thought I'd give you an update.  I had a small tumor in left breast, BRACA 1 +, sister died from breast cancer, so I opted for double mastectomy. Good news:  NO LYMPH NODE INVOLVEMENT.  Oncologist said if no node involvement I would not need radiation!  Does this sound accurate to everyone?  I have only seen oncologist once, and he said no radiation if no node involvement and a light round of chemo 4 cycles, BUT this was BEFORE I got my BRACA results.  So, I'm wondering if while I'm recovering from my surgery, I should go seek another oncologists opinion, especially one with TNBC experience?

Otherwise, so far, so good.  I got 2 of 4 drains out today, hopefully remaining 2 out on Friday.  My boobs don't hurt that much but feel weird.  Numb -like, shooting pain with movement in left breast, the one with the tumor and pain at the drain sites. Basically I'm just really uncomfortable.  When I get up and move around I'm good for about 1 hour, then I start feeling nauseous and weak.  I'm also terribly constipated.  Hopefully this all gets better soon, I'm getting a bit grouchy being in pain all the time, and not sleeping well.


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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2013 at 8:58am
Congrats on clear nodes!  All the meds can cause constipation.  Are you taking a stool softener like Collace?  It really helps.  Or try some prunes or apricots.  I was given different pain meds, a step down approach as the pain got better plus valium for muscle relaxer.  If I stayed on top of the meds, I didn't have any pain.  Let your doctor know if you're uncomfortable or in pain.  You may need something different.

With bi-mx and clear nodes, radiation is usually not recommended.  However it never hurts to get a second opinion.  If you'll feel better you might want to consult while you're recovering.  Is there an oncologist in your area that has experience with TNBC?  Here's a link to NCCN facilities:

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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Jude View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jude Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2013 at 11:01am
Glad you're feeling better after a week. Keep us posted on how you're doing. I follow your progress with interest as when I finish chemo I'm going to be getting a double mastectomy as well. (most likely mid-July) I did the chemo first as I had had two unsuccessful lumpectomies (no clear margins). My surgeon recommended a consult with a radiation oncologist even though I had no nodes because of my tumor size (4.7). Does anyone know if that makes sense? I'm seeing the radiation oncologist next month but want to be as well informed as possible before I go. I am BRCA negative.

Edited by Jude - May 14 2013 at 11:02am
Dx TNBC 1/20/13; age 60 BRCA-, 4.7 cm, stage 2A, grade 2
lumpectomies 1/24/13 and 2/15/13 clear margins not obtained; SND 0/6
TAC chemo completed 6/21 bilateral mastectomy 7/25
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123Donna View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: May 14 2013 at 11:19am
Jude,

I believe they are recommending radiation even after a mastectomy due to the tumor size and no clear margins.  See page 34 of the NCCN Guidelines.

http://www.nccn.org/patients/patient_guidelines/breast/index.html#/34/

Donna

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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