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Newly Diagnosed TNBC

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HelenC View Drop Down
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    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.


 


Edited by HelenC - Nov 18 2021 at 2:18pm
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post 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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HelenC View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote HelenC Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2022 at 6:22pm
Just want to give an update that I decided for double mastectomy. It went well and I achieved PCR. I got Covid right before scheduled surgery so my surgery was delayed beyond recommended 4-8weeks after completing chemo. I was worried but I remain positive. Luckily, they could not find live cancer cell from tissues removed. Relieved.  

I finished keytruda this week. My doctor suggest me to remove the chemo port. Do you all removed it after treatment? 

Thanks. 
Helen
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Sep 10 2022 at 6:33pm
Dear Helen,

Glad you updated us with your wonderful pCR news. Many studies have shown that a pCR is a very important indicator of dramatically increased long-term survival. 

I am not a medical professional but my experience has been that the overwhelming
majority of people who have a port, remove it post-chemo. I have seen a couple of cases where it was not clear that chemo was truly completed and then, at times, the port remained but in your case there does not seem to be a reason to keep it in.

Congratulations and best of luck to you. I encourage you to check in whenever you have some milestones. We all like to hear good news. And, if God forbid, any difficult news we shall be here for you.

warmly,

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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cookie54 View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Sep 11 2022 at 8:56pm
Congrats Helen, love to hear positive news! Breathe a big sigh of relief and treat yourself when your finished treatment, you deserve it!!

Agree, typically port's are removed if pCR is achieved.

Best wishesSmile
8/16,IDC,StageIA,Gr3,0/1 nodes ER-PR-HER2-
9/16 BMX,AC
6/20,StageIIIC,Gr3,ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes,Rad x25
11/20 thyroid ca
Xeloda2/21
Stage IV 6/22 lung mets



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