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New primary after double mast.

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Jennjdance View Drop Down
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    Posted: Oct 19 2014 at 6:25pm
I'm petrified. I'm BRCA1 positive and 4 years ago I was diagnosed with stage 2A triple negative breast cancer. I had a double mastectomy because of the gene, plus my mom died from breast cancer when she was 45 years old. I had 16 rounds of chemo back then. For the last four years I've been doing great, even had another baby! Feeling so blessed and loving life.

Until a few weeks ago when I felt a lump in the other breast. Fast forward past mammograms, ultrasounds, CT scans, MRIs, PET scans....it's stage 2A triple negative again- and considered a new primary, not a recurrence b/c it's in the other breast. Luckily, no lymph nodes or mets are involved again, but this has got to be a bad sign that it came back after all that surgery and chemo. I'm petrified.

I had surgery one week ago and am doing really great. They did a lumpectomy to get it out. The dr. got clear margins and it was successful. I start 4 rounds of chemo in about 3 weeks.

But I just can't shake the feeling of being petrified that if it came back this time, it will come back again. And how many times can I be this lucky that it hadn't spread? I've been very positive, but I'm so depressed and scared. I have two little boys, ages 5 and 1. Has anyone else ever had this happen? My dr. has seen this happen 3x in her whole career, where a woman had a double mastectomy and then a new primary came years later. Help!
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dmwolf View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2014 at 8:43pm
Jenn, I'm so sorry you are having another run in, especially after having mastectomies.  That seems really unfair, though I know it happens.    What chemo will you have?     Since you are BRCA1 positive you should strongly consider having a platinum drug as part of your regimen, and if possible a PARP inhibitor too but that would have to be in a trial.  Carboplatin+taxol dose dense => AC dose dense, with PARPi like ABT888 during the carbo/taxol phase if you can get it.    Good luck!!  (If your oncologist doesn't want to give you carbo, get a second opinion.  Two recent clinical trials show a much higher response rate for TNs with this regimen, and it's even better for BRCA1+ carriers)

Best,
d
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Jennjdance View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Jennjdance Quote  Post ReplyReply Direct Link To This Post Posted: Oct 22 2014 at 8:46pm
I'll be getting taxotare and cytoxin, 4 rounds every 3 weeks. I checked with two cancer centers and there are no clinical trials available for someone in my position, unfortunately. The fact that I've had this new cancer after 4 years makes me uneligable for any of the trials out there.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 23 2014 at 7:42pm
Hi Jennjdance,

I originally had a tiny, non-palpable TNBC treated with lumpectomy, chemo and radiation.
4 years later I had a new primary in the same breast.  I had a double mastectomy (prophy on the other side), and more chemo.
4 years after that I was diagnosed with metastasis in my left pleura.

If I were you I would ask for yearly CT scans.  I did not have any kind of follow up scans after my mastectomies.  Maybe if I had the yearly scans done I would have prevented my BC from skipping stage 3 and jumping right into stage 4.  Just maybe.

Take care and good luck!

Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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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: Oct 23 2014 at 9:27pm
Jennjdance,

What type of chemo did you have the first time?  I had Cytoxan and Taxotere with my original diagnosis.  When I had a recurrence, we tried something different Gemzar/Carboplatin.  Carboplatin and Cisplatin seem to work well for many women with TNBC, especially those with BRCA positive.  

Wishing you the best.  Hug those little ones!  I have 2 sons, but much older.  They are a joy.

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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evia View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote evia Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2014 at 11:31am
Hi. i´m sorry you have to deal with BC again... there is something i could advise you...
My wife is BRCA1+ and TNBC. We had to fight with our doctors and finally changed the treating center inorder to get carboplatin add to the standard treatment. there is enough evidence to add carboplatin in TNBC, and even more in BRCA1 positvie patients.... i copy/paste an abstract that from not long ago...
 
 
 
Citation:

J Clin Oncol 27:15s, 2009 (suppl; abstr 502)

Author(s):

J. Gronwald, T. Byrski, T. Huzarski, R. Dent, V. Bielicka, D. Zuziak, R. Wisniowski, J. Lubinski, S. Narod; Pomeranian Medical University, Szczecin, Poland; Sunnybrook Odette Cancer Centre, Toronto, ON, Canada; Regional Oncology Center, Bielsko-Biala, Poland; Womens College Research Institute, Toronto, ON, Canada

< ="text/"> sup{font-size:xx-small; vertical-align:top;}
Abstract:

Background:

Neoadjuvant chemotherapy is administered to control disease, make surgical resection possible and increase the possibility of breast tissue conservation. A further advantage of neoadjuvant therapy is that it helps to assess chemo-sensitivity to a particular agent. Induction of a pathological complete response (pCR) is one of the primary goals of neoadjuvant therapy in order to achieve a better disease-free and overall survival. Experimental data suggest that BRCA1 related breast cancer may have increased sensitivity to platinum-based chemotherapy, but clinical data are limited. The aim of this study was to evaluate the frequency of complete pathologic response after neo-adjuvant treatment with cisplatin chemotherapy in women with breast cancer and a BRCA1 mutation.
Methods: Twenty five women with breast cancer and a BRCA1 mutation with stage I, II, and III breast cancer between December 2006 and December 2008 were entered into this study. Patients were treated with cisplatin 75 mg/m2 intravenously every three weeks for four cycles. After chemotherapy, patients underwent surgery and were assessed for pathologic response in both the breast and axillary lymph nodes. Complete pathologic response was defined as no residual invasive disease in both the breast and axilla, however ductal carcinoma in situ was allowed.
Results: Twenty five patients were enrolled in the study. Thirteen patients had tumors of greater than two centimeters (52%) and seven patients had positive lymph nodes at diagnosis (28%). Twenty two patients completed four cycles of cisplatin (88%) and three patients completed two cycles (12%). Clinical complete response was observed in eighteen patients (72%). Pathologic complete response was observed in eighteen patients (72%).
Conclusions: Platinum-based chemotherapy is effective in a high proportion of patients with BRCA1-associated breast cancers. Clinical trials are warranted to determine the optimum treatment for this subgroup of breast cancer patients.
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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: Oct 24 2014 at 11:57am
Jenndance,

I agree with dmwolf and evia about trying to get a platinum added to your treatment protocol.  The research coming out now is very promising.  Can you get a second opinion or run this idea by your onc?

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 Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2014 at 12:14pm
I also agree with everyone above.  My tumors disappeared after only 3 months of carbo/gemzar.  What made them reappear again, I believe, was their morphing into ER+45%.  I hated that it progressed, but my MO said it opens up other treatment options.  I don't know about that, though.  My BC is still acting like it's TNBC.  Progression on Femara, but major regression and healing on Abraxane.  Enough about me.  Again, good luck to you!  Please let us know how you are doing.

Brenda
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2014 at 12:20pm
Brenda,

We love you too!  It does sound like yours are still TNBC acting.  Hope the Abraxane keeps doing its job!

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 Adnerb Quote  Post ReplyReply Direct Link To This Post Posted: Oct 24 2014 at 1:07pm
Thank you, Donna!
'05 Stg1 TNBC Lump, SNB, A/C, 33 rads
'09 Stg2 ER-, PR+, Her2-, Bil.Mast., T/C, Arimidex.
'13 Stg4 Lung mets, ER+, PR-, Her2-, Carbo/Gemzar, Letrozole.
'14 Abraxane in July
'15 Abraxane in March
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JMJ View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote JMJ Quote  Post ReplyReply Direct Link To This Post Posted: Oct 26 2014 at 4:02pm
Jennjdance- hang in there you can do this! Will you have chemo first or surgery? I know how hard it is with the little ones going through treatment too, pm me if you want to. Keep us posted as you are able.

+JMJ+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Holdingstrong123 Quote  Post ReplyReply Direct Link To This Post Posted: Oct 27 2014 at 10:13pm
I just finished 12 rounds of taxol with carboplatin added in every third treatment.   I couldn't feel my 3cm tumor after 3 treatments and it was barely measurable on my MRI last week. I still have to have a/c but it definitely seems promising. Keep pushing to get the carbo added in. My oncologist really is excited about the studies coming out supporting its effectiveness.
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