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Newly Diagnosed TNBC

Printed From: TNBC Foundation
Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13846
Printed Date: Jan 23 2022 at 5:07am
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Topic: Newly Diagnosed TNBC
Posted By: HelenC
Subject: Newly Diagnosed TNBC
Date Posted: Nov 18 2021 at 2:08pm
I was just diagnosed with TNBC in earlier August.  I felt a lump in my right breast while on vacation in late July. It was a big shock as I had a diag mammo and U/S last September and everything came back normal. At that time, they recommended one year visit.  Anyway, Since the diagnosis, life has changed so much..
 
Diagnosis:
  • Mam: 1.7 cm; U/S: 2 cm ; MRI: 3.6 cm; IDC Grade 3 (9/9).  no Lymph notes involved (confirmed by SLN biopsy of 3 lymph nodes).  
  • Genetic testing: CHEK2 gene and FANCM genes were found, both classification "uncertain significance" -- not sure what this means. they basically told me nothing to worry as the specific variant I have is uncertain. 
Treatment Plan:
  • Chemo first (neoadjuvant) 
    • 4 rounds of AC every two weeks - Done
    • interim check with U/S performed at 9th week and it is now 50% of original
    • 12 rounds of weekly Taxol with Carboplatin (I had a bad rash developed after 3rd week of Taxol and stopped the treatment for one week. now replaced Taxol with Abraxane. was told no change to overall rounds) -4th of 12 rounds 
    • Pembrolizumab every 3 weeks for one year.
  • Surgery: lumpectomy is offered to me pending on genetic results (at the time, genetic results are not out yet. I have not seen the surgeon since then)
  •  Radiation: pending on surgery option.
Questions: 

1. How much we expect the tumor to shrink after AC? is 50% reduction good response? My doctor seems to be happy. 

2. Do we need another interim check during Taxol? my doctor seems not indicate this to happen. 

3. How likely it already spread to distance organs if lymph nodes are good? since I did not do Pet CT (did CT and bone scan) so I am not sure if my brain is cleared from cancer plus I have some indeterminate findings. It comes to my mind from time to time what if.... 

4. Now, I am starting to think about the surgical plan. I am debating between lumpectomy VS mastectomy. What are people with tnbc choosing most often? I am worry it will come back but the doctors told me the chance it comes back to breast is low. It is more likely to have distance recurrence. I am in mid 40s and live with young kids and hubby.  I also heard recovery from mastectomy is much tough than lumpectomy. I also not sure if I need worry about genetic testing results even though it is uncertain (so double mastectomy). I am kind of torn with the options.

5. why image sizes are so different? my doctor used the MRI to staging. Are yours so different as well? 

6. Rash (whole body) due to Taxol ?- is this common? Doctor said it also could due to Pembrolizumab. We are removing one cause at a time. Keeping figure crossed and hope it is Taxol so I can continue Pembrolizumab.
 
Thanks for reading this.


 



Replies:
Posted By: SagePatientAdvocates
Date Posted: Jan 10 2022 at 3:40pm
Dear Helen C.,

First of all, you have my apologies. I am a patient advocate and have been extremely busy for the last 5 months and have not been actively looking or posting on this wonderful Forum. In fact, my apologies extend to everyone here. My heart remains with all of you but I have been getting 2-3 new calls for help every week and at present am helping about 30 people (about 1/2 with breast cancer and 1/2 other cancers) actively. 

Helen C., I am not a medical professional and won't give you medical advice but I am hoping I can be a good resource for you. I think the best thing to do would be for us to meet via Zoom. Please send me a PM with your contact info or send me an email at
info@sagepatientadvocates.org 

There will be no charges from SAGE Patient Advocates (a non-profit I founded) or from me, personally. Also, neither SAGE or myself accepts monies from oncologists, cancer centers for referrals or from drug/insurance companies.

Again, sorry for the delay.

with my love to all here,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates



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