Triple Negative Invasive Lobular Carcinoma
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Topic: Triple Negative Invasive Lobular Carcinoma
Posted By: kjr
Subject: Triple Negative Invasive Lobular Carcinoma
Date 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...
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Replies:
Posted By: SagePatientAdvocates
Date 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/" rel="nofollow - 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 https://pubmed.ncbi.nlm.nih.gov/32043897/" rel="nofollow - Triple-Negative Lobular Breast Cancer Causing Hydronephrosis. Chahin M, et al. J Investig Med High Impact Case Rep. 2020. PMID: 32043897 Free PMC article. https://pubmed.ncbi.nlm.nih.gov/24344720/" rel="nofollow - IPH-926 lobular breast cancer cells are triple-negative but their microarray profile uncovers a luminal subtype. Christgen M, et al. Cancer Sci. 2013. PMID: 24344720 https://pubmed.ncbi.nlm.nih.gov/28545469/" rel="nofollow - Age-related terminal duct lobular unit involution in benign tissues from Chinese breast cancer patients with luminal and triple-negative tumors. Guo C, et al. Breast Cancer Res. 2017. PMID: 28545469 Free PMC article.
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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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Posted By: kjr
Date 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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Posted By: SagePatientAdvocates
Date 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
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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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Posted By: 123Donna
Date Posted: Oct 05 2020 at 12:36pm
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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).
https://forum.tnbcfoundation.org/keytruda-pembrolizumab-chemo-boosts-response_topic13614_post134598.html" rel="nofollow - https://forum.tnbcfoundation.org/keytruda-pembrolizumab-chemo-boosts-response_topic13614_post134598.html
https://www.nejm.org/doi/full/10.1056/NEJMoa1910549" rel="nofollow - https://www.nejm.org/doi/full/10.1056/NEJMoa1910549
Donna
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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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Posted By: kjr
Date 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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Posted By: CMDW
Date Posted: Oct 06 2020 at 3:14pm
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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.
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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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Posted By: kjr
Date Posted: Oct 06 2020 at 3:17pm
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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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Posted By: CMDW
Date Posted: Oct 06 2020 at 3:29pm
Thank you for that clarity. I appreciate all who contribute on this site. Best wishes.
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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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