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mary2025
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Topic: A/C-T vs. TC - Second Opinion? Posted: Dec 03 2019 at 1:13am |
Unfortunately I am a newcomer, but fortunately that I found this Forum! Thank god!! For my profile - I live in New York City, age 45 (1 child), TNBC, Stage I, Grade
III, no lymph node involvement, negative pathology report, in good health and physically active otherwise. I was diagnosed on October
28, 2019 with TNBC on left breast (I didn't feel anything on my breast or any pain - it was found out through my annual
mannogram – some suspicions followed by a Biopsy and MRI and the results of
which confirmed the TNBC). Completed lumpectomy
on November 14, 2019 – the tumor was 0.4mm and all margins widely clear. Lymph Node is negative. I met with oncologist today and she recommended
either A/C-T or TC. The oncologist
said A/C-T is the gold standard but not a “must” in my circumstances given the small size of the tumor (0.4mm), and TC is an option. It is up to me to decide which one to take. My gut
reaction was to go with the most aggressive treatment of A/C-T, but then have concerns about the potential bigger toll that it takes.
I would appreciate if anyone could recommend a TNBC specialist in NYC
area for a second opinion? Any suggestions,
experiences and advice would be so much appreciated it! Wish everyone get and stay well!!! Mary
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Tamara
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Posted: Dec 03 2019 at 5:49am |
5 years ago, at the age of 48 I was diagnosed with TNBC, Stage 1, No lymph node involvement. Was an active Mom to 4 children. I live in Western New York. I made the decision to go with A/C-T and have no regrets. All is well and I remain healthy. A young, vibrant close family member was going through treatment for breast cancer at the same time (not TNBC) with lymph nodes involved and opted not to go with A/C-T. My family member is facing bone mets today. Maybe she would be facing bone mets even if she opted for A/C-T, no one knows for certain but it is something to think about.
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Kellyless
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Posted: Dec 03 2019 at 10:38am |
I'm so sorry Mary, that your facing this awful disease and having to make these terrible decisions. I was you 11 years ago. The only lasting "toll" from the ACT was menopause. TC can cause menopause as well, not to mention menopause is inevitable anyway. And what Tamara said. You typically get one shot at this, doing chemo to prevent recurrence. I had a rare recurrence 7 years later - at 7 years that meant I was indeed cured the first time, tnbc doesn't go "dormant", I grew a brand new one. That's when I found out that it's wildly rare to grow a brand new one in your breast after being cured without a gene mutation. But more importantly it was made clear to me for the first time that the "high rate of recurrence" we tnbc patients have is NOT in the breast - it's elsewhere, metastatic stage 4 is what they're looking for with us those first 2 years mostly, but up to five. So THAT is what you are fighting, not an annoying new lump in your breast to deal with, but stage 4 tnbc in an organ or bones where it is mostly incurable. So - keep all that in mind as you decide what to do with your One Chance at chemo to fight a recurrence that's most likely to be a stage 4 situation. The fact that you're young and healthy will serve you well thru chemo! As wretched as doing chemo is, you'll pop out the other side of it in 20 weeks and the side effects will fade quickly. Your hair will grow back quickly as well, and by summer you'll have all this behind you. You got this! Kelly
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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mary2025
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Posted: Dec 03 2019 at 10:22pm |
Hi Tamara, thanks for sharing. This is very helpful. Glad you are doing well. Sorry to hear about your friend - hope she will fight through!
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mary2025
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Posted: Dec 03 2019 at 10:41pm |
Hi Kellyless, really appreciated all the information. I and my family have been learning and educating ourselves about this beast on internet/through my oncology care team, but no one else speaks more powerful than the ones who went through and fought off through this awful desease! Today, my oncology surgeon suggested another expert to get a second opinion, but the earliest appointment I could get is Dec 23. I don't want to delay the chemo (ideally want to get started within a month of surgery but currently scheduled to start on Dec 18, which is 34 days after the surgery due to schedules/tests/preps). From all the information I am learning here, I should go with ACT.
So sorry to hear you had the rare recurrence after 7 years. I can't imagine how scary to face it again...lots of love and best wishes to you.
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123Donna
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Posted: Dec 04 2019 at 8:25am |
Hi Mary!
Here's a TNBC specialist in your area:
Was your tumor 4mm or 0.4mm?
Adjuvant chemotherapy Among hormone receptor-negative cancers ("triple-negative tumors") — Adjuvant
chemotherapy is standard for patients with triple-negative breast
cancer and either a tumor size >0.5 cm or pathologically involved
lymph nodes (regardless of tumor size). Patients with tumors that do not
express hormone receptors (ie, ER- and PR-negative) are not candidates
for endocrine therapy, and as the tumor is HER2 negative, they are not
candidates for anti-HER2 therapy, either. Therefore, our threshold for
the use of chemotherapy in these patients is low because this is the
only form of adjuvant treatment available to them, and because studies
have suggested a significant risk of recurrence if left untreated. The
prognosis of small (<0.5 cm), node-negative, triple-negative tumors
is generally favorable. For that reason, the benefits of adjuvant
chemotherapy are very small, and must be weighed against the chances of
serious side effects of chemotherapy. Patients with microinvasive or
very small (1 to 3 mm) tumors generally do not need chemotherapy.
Here are the NCCN Guidelines.
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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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mary2025
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Posted: Dec 04 2019 at 9:50am |
Hi Donna, thanks! Appreciated! Sorry about the typo. My tumor was 4mm. My oncologist told me the same thing, any tumor larger than 5mm, chemo is a must but mine is smaller than 5mm so is at borderline. However, given my young age (45) and high grade (III, 90%), it is not recommended not to be treated after the surgery. The question is A/C+T or TC, up to my decision. My primary doctor and my oncologist prefer A/C+T (hit it the hardest) but think I should get a second option if that helps with decision-making. I am very emotional stressed now!!!
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Kellyless
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Posted: Dec 04 2019 at 11:46am |
Thank you Mary. I popped out the other side of treatment again and I'm now officially 3 years NED having more fun than ever, just trying to wallow in lifes good stuff the best I can. Our house looks like a Christmas store crash landed in it right now, lol. I've dragged every xmas thing we've collected for over 30 years out and I'm putting it all up! because why not? That's my cancer survivor holiday suggestion - just do whatever makes YOU happy this year. Ignore it, revel in it, make a Xmas feast, eat tacos, go to the star wars movie or stay in bed and Netflix and chill. Do only what makes you happy this year!! because you have this now! https://stupidcancerstore.org/the-cancer-card/ You earned it so play it!
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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mary2025
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Posted: Dec 05 2019 at 10:23am |
Hi Kelly, you ROCK!!! I love it! That’s the spirit of living, loving and enjoying every moment of live! Happy Holidays!!!
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mary2025
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Posted: Dec 09 2019 at 6:22pm |
I came across this report and thought it maybe helpful to share:
I am still debating A/C-T vs. TC, but now inclining to TC given my profile. Set to start Chemo on 12/18.
Happy holiday, everyone!
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123Donna
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Posted: Dec 09 2019 at 9:44pm |
Dr. Winer is an expert on TNBC.
From your link:
"Slightly over half of those in the subset with triple-negative breast
cancer (TNBC) got chemotherapy. Those who received chemotherapy for T1a
TNBC as defined by a tumor size not greater than 5 mm had a 5-year
distant relapse-free survival (DRFS) of 100%, but the rate was still
close to 95% in those not treated with chemotherapy. Outcomes were also
quite favorable for patients with T1b TNBC who didn’t receive
chemotherapy ( J. Clin. Oncol. 2014;32:2142-50),
said Dr. Winer, chief of the division of women’s cancers at the
Dana-Farber Cancer Institute and professor of medicine at Harvard
Medical School, Boston."
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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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Dma71
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Posted: Dec 11 2019 at 10:57am |
hi Mary,
I see you're seven days out from your first treatment. Five years ago I was diagnosed with TNBC1b. The first oncologist recommended TAC and a second opinion recommended TC. My oncologist agreed to go with the TC and I did four treatments.
I pray that whatever treatment you and your provider agree upon that you get through it you keep your faith.
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dono7392
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Posted: Dec 15 2019 at 4:57pm |
I am also struggling with ACT (plus H because small portion is Her2 positive) or Taxotere/carboplatin (plus H) -- with the idea that 90% of my tumor is TN. I'm so confused! I would normally go with ACT for the perceived added "punch" but the addition of Herceptin greatly increases cardiac risk with ACT. My tumor is 2.1 grade 3. I have to decide by tomorrow A.M.
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Kellyless
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Posted: Dec 15 2019 at 10:16pm |
Dono, if you go with Carboplatin why wouldn't you do it with Taxol? I'd feel much more comfortable switching out the AC if you weren't also ditching the Taxol. if you don't do the AC, insist on mammograms and ultrasound early on, possibly after 3 weeks, maybe 4. Starting with a 2.1 cm grade 3 tumor you don't wAnt to get further than a month or so in without making sure you're getting shrinkage and not growth. I think that's a good idea for any chemo, if one isn't working find out quickly, you can always switch anytime. But seriously, why ditch the Taxol, it's proven to work well with carboplatin for our disease?
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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dono7392
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Posted: Dec 15 2019 at 10:30pm |
Kellyless, thanks for your reply. I already had surgery so this would be adjuvant. I asked about Taxol, but the Onco declined to give me Taxol with carboplatin because it's not "standard of care." It's infuriating.
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123Donna
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Posted: Dec 16 2019 at 7:53am |
dono7392,
This link shows the NCCN Guidelines for chemotherapy or what many doctors will refer to as standard of care:
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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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Suebhs
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Posted: Dec 29 2019 at 12:37pm |
I'm 50 y.o. diagnosed with stage 1, grade 2, TNBC, 7mm tumor, no lympth node involvement and clear margins. The first oncologist I met with gave me the choice of ACT or TC, but slightly leaned towards the ACT because of the "slight" advantage it might give. I sought a second opinion and this oncologist came in with facts, statistics, graphs, charts and real data. The other oncologist hadn't even looked at my pathology report until she sat down with me. I felt more comfortable going with my second oncologist given his information, knowledge and participation in the research on TNBC. He suggested TC over ACT because statistically it would only give me a .5 percent advantage in my circumstance. I'm so sorry you were given this difficult decision. I completely understand. We're fortunate in a way because it was caught early but have the difficult task of weighing risks versus benefits. Prayers that your treatment is going well and all of this will soon be a distant memory leading into a bright and healthy future.
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Kellyless
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Posted: Jan 08 2020 at 8:55am |
Please let us know how you do in chemo, and what the shrinkage looks like along the way. Also what your final pathology is, we never seem to hear back from the TC patients o n their final results. It would be awesome to see a PCR with a TC patient, please let us know how it goes! Thanks for posting!
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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads 6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!
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Oncmd
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Posted: Apr 24 2020 at 3:24am |
Hi Mary, I feel sorry for the hard decisions you have to take. If you have still not taken second opinion, you can seek online second opinion from OncMD at https://oncmd.us. This wll help of you are quarantined or locked down. They have board certified Cancer experts based in United States. You might find one in New York too. Stay Safe and Take care.
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