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Any info on a Lobular TNBC?

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Topic: Any info on a Lobular TNBC?
Posted By: Jillard
Subject: Any info on a Lobular TNBC?
Date Posted: Feb 19 2014 at 12:00am
I was diagnosed in early December with invasive lobular carcinoma that is a TNBC.  I have since had a bilateral mastectomy two weeks ago.
Now that all the pathology is in from the tumor and lymph nodes, I will meet with the doctors again next week to discuss where to go from here.  I've been reading all the material I can locate regarding TNBC but have found very little involving lobular tumors.  Since this is what makes mine an even rarer cancer, I'd love to go into this meeting armed with knowledge.
Is there anyone that has information they can share with me regarding an ILC that is TNBC?
Thanks so much -
  



Replies:
Posted By: 123Donna
Date Posted: Feb 19 2014 at 7:35pm
Hi Jillard,

I think lobular TNBC may be more rare than IDC TNBC.  I could only find one thread talking about it.  It's an old thread, but I'll post the link in case you want to look at it.  I have a friend who was stage 0 lobular TNBC.  She ended up having a mastectomy as the first surgeon didn't get clear margins requiring further surgery.

http://forum.tnbcfoundation.org/any-other-3n-with-invasive-lobular_topic551_post4756.html?KW=Lobular#4756" rel="nofollow - http://forum.tnbcfoundation.org/any-other-3n-with-invasive-lobular_topic551_post4756.html?KW=Lobular#4756

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



Posted By: Jillard
Date Posted: Feb 22 2014 at 10:38am
Thank you, Donna. This helpful but definitely a few years old.
Rare amongst the rare isn't what I hoped for here but it was worth asking. Perhaps someone will spot this with something more recent.


Posted By: Charlene
Date Posted: Feb 22 2014 at 11:39am
Jillard,
My cancer was also lobular.  What I have learned over the years is that lobular tumors grow in a spider-like pattern, making them more difficult to detect.  I have also read that they MAY have a slightly better prognosis.  I can't cite my source, but I read that they always get a "3" on tubule formation on the Nottingham Histologic Grading scale.  Wish you the best.
Charlene


-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED


Posted By: LisaHR
Date Posted: Mar 07 2014 at 7:27pm
Jillard & Charlene,
I was diagnosed today with lobular carcinoma. I plan to meet with surgeons at UNC to discuss bilateral mastectomy in a couple of weeks. Just wondering what chemo treatments you are planning?
Best wishes for you both.
Lisa

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Lisa, ductal carcinoma, nodes-, Stage I, Grade 2


Posted By: 123Donna
Date Posted: May 14 2014 at 8:10pm
First genetic link discovered to difficult-to-diagnose breast cancer subtype

http://www.oncologynurseadvisor.com/first-genetic-link-discovered-to-difficult-to-diagnose-breast-cancer-subtype/article/346504/?DCMP=EMC-ONA_EditorsChoice&spMailingID=8593892&spUserID=MjMyNTE5OTY0MAS2&spJobID=301497723&spReportId=MzAxNDk3NzIzS0" rel="nofollow - http://www.oncologynurseadvisor.com/first-genetic-link-discovered-to-difficult-to-diagnose-breast-cancer-subtype/article/346504/?DCMP=EMC-ONA_EditorsChoice&spMailingID=8593892&spUserID=MjMyNTE5OTY0MAS2&spJobID=301497723&spReportId=MzAxNDk3NzIzS0


-------------
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



Posted By: Jillard
Date Posted: May 15 2014 at 12:23am
Thank you for the link, Donna. I have no history of BC in my family of really long lived women so there is no genetic predisposition in my situation but, since I have a daughter who now has a family history, the article is very interesting.

Lisa, I'm sorry to have not replied sooner to your question. With all that's gone on in the last few months, I overlooked your post.
I had a full bilateral mastectomy in early February. There was only a trace located in a single of six lymp nodes but even that was enough that I wanted the possibility of any stray cells being eradicated. My oncologist had me do four rounds of TC (Taxotere and Cyclophosphomide) at three week intervals. I am recovering from the last treatment now. I still feel crummy but very accomplished and on the way to recovery.

What course of treatment did you end up with after your surgery? Does it ever strike you as crazy to even be having this conversation? Certainly not where most of us would have seen ourselves a year ago. How much I've learned in such a short time!
Wishing you all the best,
Jill



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