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Questions about Chemo

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dustyacre View Drop Down
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    Posted: Jun 05 2012 at 12:48am
Hello!  I was diagnosed in January with Grade 1 stage 3 TNBC.  Tumor was less than 1 cm, no lymph node involvement.  Irregularity was discovered at regular mammogram and confirmed by ultrasound - no lump detected (nobody could feel anything, including all the doctors that examined me). Biopsy took nearly all the tumor and came back positive for TNBC.  Had lumpectomy (margins were clear) and finished radiation about 3 weeks ago.  My oncologist conferred with a doctor at the cancer center at the University of Michigan and they say my case is a tough one.  They said I have approx 20% chance of recurrence and that chemo will only help that percentage at the maximum by 5%.  I have been trying to do research to determine if I should have chemo or not. The U of M doctor said I should strongly consider it but that it was a tough call.  My oncologist said she has no strong feelings either way due to the small percentage of help it may or may not give me.  So....I am wondering if I should go through it or not.  I would appreciate any thoughts on this.  I am wondering if I should put myself through it and then have to go through it again if it doesn't help at all and the cancer comes back.

Thank you!
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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: Jun 05 2012 at 8:26am
Hi Dustyacre and welcome,

I agree it's a tough decision for you.  Can you get a second opinion from another NCCN facility?  


Usually with TNBC Stage 1, chemo is almost always recommended for tumors greater than 5mm.  I'm not a medical expert, but I think getting more than one opinion will make you feel better about this decision.  Chemo isn't fun, but if you decide against it, will you worry more that it might return?  Getting another opinion will help you weigh all the pros and cons of chemo.  Wishing you the best, this is a tough one.

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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Katdoll View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2012 at 8:35am
I agree, get a second opinion.  My sister with a 6 mm tumor, stage 1, received an unqualified recommendation for chemo.  She was treated at Dana Farber, which is on the top 10 list for cancer centers.  Her chemo regiimen was a gentler regimen than I got (I had a 1 cm stage 1 tumor).  Her only side effects were fatigue and hair loss. 
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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Lillie View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Lillie Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2012 at 9:28am
Dear Dustyacre,
Welcome to the site.  So sorry you have a reason to be here, but you have come to a good source for information, discussion, or most anything a Support Group can offer. 
 
I agree with Donna, getting a 2nd opinion will help, but also you need to consider your own feelings about facing the future with/without chemo. 
 
I have a good friend who just had a similar experience as you except her cancer was ER+PR+, Stage 0, Grade 1.  She feels completely comfortable with a lumpectomy and radiation.  She is not doing chemo. 
Triple Negative is a more aggressive animal and that makes a world of difference.
 
Good luck with your decision.
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 Katdoll Quote  Post ReplyReply Direct Link To This Post Posted: Jun 05 2012 at 1:59pm
I'd also ask your oncologist if s/he can give you an idea of what your prognosis would be if you did have a metastasis.  I imagine you'd want to weigh that against the odds that chemo would zap the metastasis away.
 
The odds you were given are a little different from what I was given.  I was stage 1 with a 1 cm tumor.  I was told the chance of mestastasis without chemo was 20% for tumors 0-1 cm (so probably higher for me since I was at the upper end of that range), and that if I got chemo the chance of metastasis would go down to about 10%.  I did some reading about prognosis if there was a metastasis and I did not like what I read, so I opted for the chemo.  Chemo wasn't nearly as bad as I feared.  I'm doing well today, 2 years out.
Tested positive for BRCA1 mutation (187delAG) in 4/09 @ age 44; BSO 9/09; diagnosed w/TNBC in 10/09; 1 cm Stage 1 TNBC IDC, grade 3 + 1.5 cm DCIS; BMX 11/09, nodes clear; chemo (AC/T).
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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: Jun 05 2012 at 7:23pm

Dustyacre,

Sara posted this in another forum and I'll try to find the link, but I thought you might benefit from reading it.

In his presentation on the controversies related to adjuvant therapy for T1a/bN0 triple-negative and HER2- positive breast cancers, Anthony D. Elias, MD, of the University of Colorado Cancer Center, said small breast cancers with aggressive biology “represent a continuum with their larger brethren.

”Although the risk of disseminated disease is low following locoregional treatment, patients with certain subtypes of disease remain at greater risk. These patients, however, have not been included in prospective trials.

Treatment using the same approaches as those used for larger tumors can result in excellent outcomes, but that comes at a “cost of overtreatment and consequent toxicities for most of these patients,” he said. 
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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dustyacre View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dustyacre Quote  Post ReplyReply Direct Link To This Post Posted: Jun 06 2012 at 8:30am
Thank you so much, everyone!  Your experience and insight has helped a lot.  Donna, I would be very interested in reading the rest of Dr. Elias comments if you can find the link. 

Blessings,

Kayla
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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: Jun 06 2012 at 8:44am

Kayla,

I think I found the article:

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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*Nancy View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote *Nancy Quote  Post ReplyReply Direct Link To This Post Posted: Jun 10 2012 at 9:54am
Kayla,
My story was very similar to yours. One day I was fine and the next day, POW!, I was diagnosed with this itty, bitty aggressive TN breast cancer. (Well, it wasn't exactly the next day, but you know what I mean.)
I was also given all the statistics about if I do this, then the chances decrease by x % and if I do that, then the chances decrease by x more %. No one told me I had to do or not do anything: it was all left up to me. I researched as much as I could and I would ask many questions to anyone involved with my care.
For me, I decided to do whatever I could, to increase my odds by whatever I could do to decrease the chances of this horror coming back. It wasn't an easy decision. Three of my 6 children were still at home at the time. Although I knew they would "help" me as much as they could, I didn't want them to have to be responsible for a sick mother. So I did what I felt was best for me, but I hid as much as I could from them
Let's be honest here: chemo and/or radiation is not a piece of cake, although I do know that I didn't have as hard of a time with it as some have had. When I would be having side effects or pain, I would sit off by myself, try to get comfortable, and repeat a "mantra" over and over again. Basically, I would dedicate my pain/suffering to my husband, my daughters, my sons, my parents, my grandparents, my sisters, my brothers, my nieces, my nephews, my aunts, my uncles, my cousins, etc., etc. You get the picture. For me, it became a sacrifice of sorts. In my mind, I felt I could do or take anything, as long as I was doing it for someone I loved.
What I am wanting to say is that whatever decision you make, be comfortable with it. Make sure that you do what is best for you. When the treatment is all over, and you are thinking about the journey you just completed, be sure that you won't have regrets. We all are afraid at times. I am not saying that fear will not follow you and peek out from time to time. I feel one of the best "medicines" is having a positive mental outlook toward the medical treatment you have chosen to endure.
~ Nancy ~


Edited by *Nancy - Jun 10 2012 at 9:55am
Dx March 2010, age 54, 5 mm tumor, Stage Ia, Grade 3, 0/3 Nodes, Ki-67 70%,

Lumpectomy April 2010, TC x 4, Rads x 33, Treatment completed Sept 2010, NED 06/17
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