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How aggressive for early tnbc?

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Suebhs View Drop Down
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    Posted: Nov 09 2019 at 9:49am
Hello everyone. I'm a 50 y.o. recently diagnosed with tnbc stage 1, grade 2, no lymph node involvement, mass is 7 mm, clear margins when the mass was removed during lympectomy (T1b NO MO).
I'm confused about how aggressive treatment (chemo) needs to be with the smaller, early stage type. I've been told I can do the less aggressive regimen but another doctor slightly leaned towards the more aggressive approach. But said it's ultimately my decision because the risk of side effects may not be worth the possible addeed benefit of going the more aggressive route. Then I've researched medical publications online that say women with T1a and T1b tnbc don't have a significant improvement in prognosis by having chemo, so it should be weighed carefully whether chemo is necessary. Then of course, I'm getting input from well meaning friends who are like, "my nurse says this...," or "I meet a lady who had tnbc and she says..." and "you should listen to this person because they know   what they're talking about" and it muddies the water.  
I would love to hear the experiences of other women like myself who've had the early stage tnbc and what treatment options you were given. 
Thank you and God bless 🙏


Edited by Suebhs - Nov 09 2019 at 11:38am
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Meadow View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2019 at 9:38pm
There is data based on years of study that will show recurrence rates with and without chemo based on various combinations of factors such as age, stage, which type of cancer you have, which chemo regimen is used (or not). I encourage you to ask for it, as it could help you decide whether to do chemo and perhaps also which chemo regimen to do. However, it is possible that with your small tumor size, the data might not be clear.

My cousin had a 6mm TNBC tumor, Stage I. She was treated at one of the top 5 cancer centers. She was told that due to her small tumor size, there was no hard evidence that chemo would improve her odds of survival, but that it was possible. She was given the option to do Taxotere. This is relatively gentle type of chemo for most people, and she had no side effects except for hair loss and fatigue. She was told that more aggressive chemo regimens would not improve her survival rate.

I was Stage I with a 1cm (10 mm) tumor and had a harder decision to make. Wtih a 1cm tumor, there was hard evidence that my chances of recurrence were significantly higher if I did not do chemo. For my profile, the survival rate with Taxotere was slightly higher than for another chemo regimen (AC/T), but AC/T usually has harsher side effects (it did for me but not terrible) and carries a small risk of very serious heart damage (didn't happen to me). I went with the AC/T. I knew that a recurrence would likely not be curable, and I wanted to avoid that at all costs.

This was a long time ago, things may have changed since then, there may be better data, and recommendations and statistic often vary based on age and other individual characteristics. But I thought you might want to hear about our experiences.

God bless and good luck to you!
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Marymom View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Nov 13 2019 at 10:26pm
Hi Meadow...may I ask how long ago?  You also mentioned your cousin had tnbc as well.  In my family we now have three cousins that have tnbc.  One is 15 years out, one just started CMF chemo and will have 6 weeks of radiation and myself, twenty three months out and I did AC/T with 16 rads and 4 power blasts. I went through my treatment and was just tired and lost my hair...my heart handled it well.  We all had a lumpectomies. We all were early stage.  
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2019 at 8:13am
Originally posted by Suebhs Suebhs wrote:

Hello everyone. I'm a 50 y.o. recently diagnosed with tnbc stage 1, grade 2, no lymph node involvement, mass is 7 mm, clear margins when the mass was removed during lympectomy (T1b NO MO).


Suebhs,

With a 7mm tumor, you are in that grey area for treatment recommendations for chemo.  I thought the cut off was 5mm or larger where chemo was often recommended.  Here's a link to the NCCN Guidelines for adjuvant chemotherapy.  For your stage (T1b N0 M0), it says "often if high risk".




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 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Nov 14 2019 at 8:18am
Marymom,

You mentioned that several family members have had TNBC diagnosis.  Have you had genetic testing that includes a full 30 gene panel?  Here's some more information on genetic testing:



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 Meadow Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2019 at 4:24pm
Marymom, to answer your question, my cancer journey was in 2008/2009. And here's my family history information, since you've shared your own. My grandmother died of breast cancer, and all four of her female descendants two generations below her have the mutation and have had TNBC.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Nov 15 2019 at 11:12pm
Meadow, thank you...for the genetic information.  I was tested for the BRACA....I will revisit with MSK and present your valuable information.  Thank you so much for your input.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Suebhs Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2019 at 9:43am
Thank you all for sharing! I met with an oncologist this week for a second opinion and felt very confident and assured with my decision. This doctor was very knowledgeable and gave me the facts and statistics - which is exactly what I was looking for. Like you said, I'm in that grey area where it's a decision of pros versus cons for chemo. I decided to go with the less aggressive regimen which the doctor fully recommended and supported. He told me there would only be a 0.5 percent advantage in doing the more aggressive approach. Now my next decision is port or no port - and it's a 50/50 choice. No easy answers in this "grey area." But I'm truly thankful it was caught early!!
Thank you all again for the information! Wishing you all health and happiness Heart
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Marymom Quote  Post ReplyReply Direct Link To This Post Posted: Nov 16 2019 at 8:36pm
Hi all!

I did not have a port. I had 16 treatments and weekly blood draws...for some reason it was never offered to me and I did just fine.  I would prepare my veins for them...I would warm them up on my way there with the hot packs.

If you do not get a port...I suggest this with blood draws on some days they can do a needle prick instead of a draw.  I think the nurses would have loved me having a port...but my oncologist never offered it.  I was one of the few who did not have one.  I have to say, I made it through just fine. I went to Sloan.  It just was never offered and I never questioned it, honestly...I thought my veins would be destroyed.  They seem to be fine. You have a lot to consider Suebhs...some days I had wished I had one.  It was stressful for the nurses...I felt bad for them.  As for me...I was A Ok.

I wish you all a good evening!🙏🏻

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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kellyless Quote  Post ReplyReply Direct Link To This Post Posted: Nov 17 2019 at 12:21am
I've had two ports, they were a godsend. Painless putting in, painless access for both blood and chemo (I've had a lot of chemo, but omg how many blood draws? The mind boggles)  painless removal, today my arm veins are amazing - first stick every time. Considering I have zero axilla lymph nodes on the left, missing first 3 on the right, minimizing the sticks on my arm is a very good thing. You never know what the future holds with TNBC - trust me on that. Protect your simple arm veins, hopefully you'll need them for many, many years in the future. Good luck with chemo! And welcome to the site - so glad to have you, but sorry for your need to be here. You'll be done by summer next year, come back and celebrate with us! 
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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