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Triple Negative Invasive Lobular Carcinoma

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kjr View Drop Down
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    Posted: Oct 03 2020 at 10:14pm
Does anyone else have lobular in combination with Triple Negative?

I am at one of the top five cancer hospitals with doctors who have decades of experience and they have not seen it before.

I am hoping that there is someone involved in this triple-negative site who has the same diagnosis.

I know it's rare but it would be so encouraging to know there are others out there...

Edited by kjr - Oct 03 2020 at 10:22pm
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2020 at 1:21am
Dear KJR,

I am very tired but your question intrigued me...Lobular and TNBC seems to be a rare combination but it does exist. If you google PubMed you can go on the link and put
lobular triple negative breast cancer in the search bar.

https://pubmed.ncbi.nlm.nih.gov/

If I have a chance this week I will look for other articles. I have helped several women over the years with lobular breast cancer over the years but none were TNBC.

One thought is to have a second pathology opinion done...to make sure the luminal finding is reconfirmed.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote kjr Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2020 at 10:27am
Hello Steve and thank you for your response.

No need for a second pathology. I have been through chemo; mastectomy; sentinel lymph nodes removed showing extra capsular growth; am presently on capecitabine and applying to be part of TNC trial with Pembrolizumab (maybe someone else in this forum has had experiences with this drug...?)

I have also read everything available on Pub Med.

Since my cancer is so rare (no bites here yet from someone else who has this combination) I would so like to know there is another person out there with the same diagnosis. Alas, no questions about it being correct.


TN is an aggressive form. ILC makes it yet more aggressive.

All best and with thanks

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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 04 2020 at 12:52pm
Dear kjr,

Hopefully someone/s will respond.

If you would ever like to chat please send me PM or contact me at-

steve@sagepatientadvocates.org I will send you my phone number. There are no charges but I am not a medical professional and will not give you medical advice.

Are you able to get to the U.S. and have insurance in U.S.? We can talk about this directly.

Wishing you much success with your treatment plan.

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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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 12:36pm
Hello KJR,

My friend was diagnosed with Stage 0 lobular TNBC over a decade ago (about 13 yrs).  It was within 10 months of giving birth to her second child.  She had a mastectomy and since it was Stage 0, no further treatment was needed.  I think it is rare and most cases are IDC (Invasive Ductal Cancer).




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

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Post Options Post Options   Thanks (0) Thanks(0)   Quote kjr Quote  Post ReplyReply Direct Link To This Post Posted: Oct 05 2020 at 1:07pm
Thank you for your note Donna.
Your friend is lucky she was diagnosed so early.
My cancer is Stage 3.
It was undetected in two mammograms over two years despite the tumour being 10cms.
All best
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2020 at 3:14pm
I won’t repeat my history here, but I am looking at my pathology:

Right breast 3 o’clock consists of four yellow, lobulated, fibroadipose cores ranging from 0.2 to 1.5 in length

Invasive ducal carcinoma Grade2-3

I assume lobulated means lobular.

Completed AC/T on 9/25/19, lumpectomy 10/10/19, 30 radiation.
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
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Post Options Post Options   Thanks (0) Thanks(0)   Quote kjr Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2020 at 3:17pm
No you don't have lobular cancer. In your report is says quite clearly you have Ductal. 'Lobulated' describes the shape not the type of cancer.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote CMDW Quote  Post ReplyReply Direct Link To This Post Posted: Oct 06 2020 at 3:29pm
Thank you for that clarity.  I appreciate all who contribute on this site.  Best wishes.
66 at diagnosis. 3/2019, AC/T, lumpectomy, 30 radiation. Complete 12/19. IDC, grade 2-3, 4 cores .2-1.5cm, yellow lobulated fibroadipose, stage pT1b, NO
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