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Disney Girl View Drop Down
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    Posted: Dec 29 2011 at 11:52am
Hi I am new to the forum.....I was diagnosed with TNBC in March 2011 had lumpectomy March 2011 8 rounds of chemo and 36 radiation treatments.....treatment ended November 2011. I am living in such fear and anxiety of cancer returning that I am now considering mastectomy (double).....I have a family history of breast cancer, my dad's mother and grandmother passed away from breast cancer and I have aunts and cousins on my mom's side that had it as well...I was tested for the BRCA gene and oddly and thankfully it came back negative, I was thrilled when I found out but I am now not even considering that......I'm not sure what to do I keep hearing alot of woment with TNBC have a recurrance and I just don't think I can live with that coming back so I'm thinking about have the double mastectomy. I just don't want to live in fear!!!!
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Charlene View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Charlene Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 12:26pm
Hi, Disney Girl,
 
At the end of treatment, it is very common to experience a tremendous fear of recurrence, regardless of whether your treatment included a lumpectomy or a mastectomy.  Before opting for more surgery at this time, you might give yourself a little more time.  You might also seek out several medical opinions regarding whether a double mastectomy will improve your long term prognosis.  When I was beginning treatment, I was told by both my surgical oncologist and my medical onocologist that a mastectomy was still no guarantee against recurrence.  And, of course, that was what I really wanted--a guarantee that my treatment had cured me.  I've come to accept now that I will never get that guarantee.  I wish you all the best in the future!
Charlene
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED
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ds21 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote ds21 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 12:58pm
Have you spoken to a genetic counselor? Do you know if you just had the standard BRCA analysis? BART analysis is separate test that picks up some rearrangements missed by the standard analysis.
Co-survivor
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Disney Girl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Disney Girl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 5:35pm
Thank You Charlene
I'm sure my Oncologist explained alot to me but I was still in that "frozen" state of mind. All I knew at the time is that I wanted to keep my breasts. I have my next mammogram in Feb and follow up with her in March. I will be discussing it further with her about my options, risk.....and so on!!!
I appreciate you responding to me and I know there is no total guarantee but if my risk is higher of it coming back without the mastectomy I may opt to have it.
 
Thanks Again
Smile
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Disney Girl View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Disney Girl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 5:37pm

Hi ds21,

Honestly I don't remember if I had just the standard BRCA, I did give them all my family history on my dad's and mom's side!!! I still a copy of it so I'll have to take a look at when I get home from work. If it doesn't show it on there then I'll ask my oncologist in March.

Thanks
 
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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: Dec 29 2011 at 5:57pm
Disney Girl,

The fear of recurrence is something we all face, especially after we've finished treatment.  Having a bi-lateral mastectomy can help prevent a recurrence in the breast area, but doesn't prevent all recurrences to regional or distant areas.  It's one of the reasons they treat TNBC with chemo.  You might want to ask your onc with your family history on both sides if the chances of a recurrence or contralateral breast cancer could be prevented with the bi-mx.  Ask your onc if there could be other family/genetic mutations that aren't captured in the BRCA test and if your chances are higher.   You'll also have to ask yourself if you would feel better with the bi-mx.  Will constant monitoring with self exams, mammograms bring too much anxiety for you?  There is no right or wrong answer.  You have to decide what's best for you and brings you the best level of comfort and peace.

Wishing you the best,

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Disney Girl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 6:06pm
Hi Donna,
 
The doctor did warn me about the emotions I would be going through after treatment, I feel like I have been on a rollercoaster since then......with crying and not sleeping being so afraid. I will definitley talk to my onc about the chances of recurrence and I will ask her also about the testing as well....Thank You for that!!! Constant monitoring doesn't bring to much anxiety for me, I think I would be more anxious if I didn't have all that.
 
Thank You Donna
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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: Dec 29 2011 at 6:12pm
Disney Girl,

As you can see from my signature that I opted for a bi-mx at diagnosis.  I still had a recurrence to an internal mammary node.  I'm happy with my decision though as I had very dense breasts and worried I wouldn't catch a recurrence early enough the next time.  After the surgery, the path report showed there was precancerous cells in the other (good) breast.  I feel that it would have been just a matter of time before I had it in the other breast.  This isn't typical, but wanted to share my experience.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote Disney Girl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 6:22pm

Donna,

I did mention to my onc I wish I would have chosen bi-mx at the beginning, but I was just so afraid!!! My nodes were clean and when I had my mammogram from which I was diagnosed they did biposy 2 places and one came back not cancer but they would have to keep an eye on it...I think that's what I keep going back to. I know I have alot of discussing and decisions to make.
Thank You so much for your response
 
Barb
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 6:23pm
Hi Disney Girl,
Welcome to the site. You have been given such good advice by Donna and Charlene that I really have nothing to add except.... the emotions, fear, sleeplessness are all normal. If you can't seem to get past it, maybe some professional counseling would help. Good luck and keep posting.

God Bless,
Lillie
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SueL Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 10:04pm
Hi Everyone,

I am new to this forum and having read many of your posts I feel I am in the company of extremely compassionate educated women on the subject of Triple Negative! I was diagnosed in May with stage 3 of my left breast w/ a mass about 8 cm and one node involved. My onco put me in a Yale/Brown study of chemo along w/ the drug Avastin, which recently has been controversal with the FDA. I underwent 3 months of Avasin with chemo and the mass shrunk considerably to about 1cm then they did surgery to get the rest out. My pathology is clean at this point! Yeah! My question is about the Avastin. My onco wants me to continue it for almost a full year to prevent recurrance, but this drug has nasty side effects that can be fatal so I am wondering if anyone else has had experience with Avastin. I already have experienced the nose bleeds and irritation from it. Thank you!
Sue L.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Dec 29 2011 at 11:08pm
SueL,

There are many women that have used Avastin.  You can try the Search button and type in Avastin and see the posts.  Here's one thread with members sharing their experience with the drug.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote jeri49 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2011 at 9:56am
Disney Girl, 
I, too, am a newly diagnosised TNBC person, who also lives in caution daily.  I won't call it fear because I try to lean on God for peace.  I chose the lumpectomy as well as my onc said I was a good candidate for it since I had a small lesion, found early,neg lymphs and BRCA 1 & 2 NEG.  Rememeber, anywhere you read that radiation + lumpectomy = mastectomy.  Same results, they say.  So the question is, or this is what I asked myself..do I want to go thru all the recovery time and reconstruction?  My answer was no, but I do question my decision often.  But if I had had a db mx, I feel certain I would have questioned that as well.  Remember, it can return even with a db mx, and it can mets to other organs.  Just know that God is in control, even if we sometime want to do it ourself.  Be aware of your body and do not hesitate to follow up with concerns.  Just live one day at a time, and cherish each moment...
 
Diagnosised 10/20/11, age 49, IDC TRBC, Stage 2, 1 cm , 0/2 nodes, BRCA ng, awaiting treatment of chemo followed by rad.
jerimsnurse
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Disney Girl Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2011 at 5:29pm
Hi Jeri,
I go back and forth with what to do I don't want another surgery but if it lessens my chance of recurrence then I may opt to have it. I want to wish you the best through your chemo and radiation treatments. Keep me posted through your treatments.
 
Barb
DX 3/11 @ 49 TNBC
Stage 1 Tumor size 1.8 cm Lumpectomy 3/11
0 Nodes
8 Chemo 36 rads
BRCA-

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Post Options Post Options   Thanks (0) Thanks(0)   Quote sue Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2011 at 6:45pm
Jeri,

Welcome.  This is a very caring, helpful, supportive, understanding and loving TNBC family.  I have a similar history to yours (see bottom of this post).  I am now 7 months out from finishing radiation treatments which was the end of my treatments. Wishing you the best with your treatments and recovery.  I have learned to keep better records of my care and be much more pro-active than in the beginning of my cancer journey. 

May God continue to bless us all with the ability to cherish each moment, live one day at a time and develop the wisdom needed to look out for ourselves. 

If you have not already found it, there is also a spiritual thread on this website which can be very inspiring and comforting to some.    

Peace and Love,
Sue

Dx 7/10, age 53. TNBC left breast, stage I, grade 3, IDC 0.5 cm, DCI 2.5 cm, 0/8 lymph nodes neg. BRCA-. T/C x4 finished 2/09/11, rads x34 finished 4/21/11.          
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Natalie Quote  Post ReplyReply Direct Link To This Post Posted: Dec 30 2011 at 7:15pm
I too was told that a double mastectomy would not decrease my chances for reoccurance.
I took my case to 4 different surgeons, the first 3 said no difference but they would do what ever I wanted. The last one agreed with the Mastectomy.
I had been saying ever since diagnosis that this is what I wanted.
I had very dense breasts loaded with calcifications and scar tissue from past biopsies.
To me there was no option. I couldn't wrap my brain around it, if I have a DM how could it not increase my chances for no reoccurance. Decreasing tissue by more then 95% thereby decreasing density, calcifications and scar tissue.
 I have met many women that had a lumpectomy,chemo, then DM and the docs found more cancer after the fact through testing all the tissue.
I just had my Double on the 27th. Extremely sore but I am able to do very light stuff, hey I get to be babied now for a little bit yay. Still waiting for pathology to come back. Makes me feel better knowing I did everything physically possible, especially knowing we don't have many options with TN.
 
Just my thoughts. You have to make and be comfortable with your own choice. I too had 8 cycled chemo (ACT) kicked my butt. Waited 10 weeks to have the surgery to get stronger, but very happy with my decision.
Be well everyone,
Nat
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