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Topic: ILC and triple positive. False HER2 positive?

Forum: ILC (Invasive Lobular Carcinoma) — Just diagnosed, in treatment, or finished treatment for ILC.

Posted on: Jul 6, 2018 08:49PM

SoozyCue wrote:

My first HER2 result was equivocal. The second result was positive. I don't know at this time which type tests were done.

My surgeon isn't counting on the HER2+ being accurate until surgery and that pathology because it is rare for someone with ILC to be HER2+. He is widely considered the best breast surgeon in the area, employed by a hospital in the Jefferson Hospital network (Philadelphia), does 300 surgeries a year, and he has seen it once in his career.

My PCP thinks it's accurate because many of my problems are rare and one of my rare problems requires a strict medical diet that is mostly comprised of all of the foods that are bad for HER2. My PCP has treated me for over a decade and manages all of my (significant) medical issues. He speaks often with my specialists and surgeons, so he knows (at a higher level) every thing going on with my body.

I know there is no way to be 100% sure until my breast surgery (week of 7/16 at the earliest) but what is there general experience/frequency here with women with ILC that are HER2+? I found a couple threads, but older, and not really addressing the possibility of false positives.

Dx 6/25/2018, LCIS/ILC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 7/31/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/10/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jul 8, 2018 11:50AM RobinLK wrote:

You should also post this question on the Triple Positive thread. There are not many of us with ILC there, but there are many knowledgeable women and one may have an answer for you.


https://community.breastcancer.org/forum/80/topics/764183?page=1100#idx_32971

Mixed BC: PILC with a little IDC thrown in to make things interesting. Extra nodal extension and LVI. Dx 10/11/2013, ILC/IDC, Right, 2cm, Stage IIIA, Grade 3, 9/9 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/29/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Surgery 11/14/2013 Mastectomy: Right Chemotherapy 12/4/2013 AC Targeted Therapy 1/30/2014 Herceptin (trastuzumab) Chemotherapy 1/30/2014 Taxol (paclitaxel) Hormonal Therapy 5/2/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/27/2014 Breast, Lymph nodes Surgery 10/5/2015 Prophylactic ovary removal Hormonal Therapy 8/8/2016 Femara (letrozole) Hormonal Therapy 9/20/2016 Aromasin (exemestane) Hormonal Therapy 10/23/2016 Arimidex (anastrozole)
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Jul 8, 2018 01:00PM SoozyCue wrote:

Thank you. I didn't notice that one yet, but I will go look.

Dx 6/25/2018, LCIS/ILC, Right, 2cm, Stage IIA, Grade 2, ER+/PR+, HER2+ (FISH) Surgery 7/31/2018 Lymph node removal: Sentinel; Mastectomy: Right; Prophylactic mastectomy: Left; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 9/10/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jul 8, 2018 01:50PM SpecialK wrote:

In the last two pages of the Triple Positive thread there are two current members posting who are ILC and Her2+, as is RobinLK (hey girl!) above, so it definitely does happen. ILC represents about 10-15 percent of diagnosed breast cancers, but don't be thrown off by the dichotomy of ILC being a slower growing type and Her2+ more aggressive, as if they can't co-exist - as they are two completely different aspects of growth and are independent of each other.

BMX w/ TE 11/1/10, ALND 12/6/10. 15 additional surgeries. TCHx6 2/17-6/2/11. Herceptin until 1/19/12. Femara 8/1/11, Arimidex 6/20/12, back to Femara 6/18/13-present. Dx 9/27/2010, IDC, Right, 2cm, Stage IIB, Grade 3, 2/14 nodes, ER+/PR+, HER2+ (IHC) Dx 9/27/2010, DCIS, Stage 0, Grade 3
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Jul 9, 2018 10:11AM RobinLK wrote:

Hi SpecialK! You are exactly one of the knowledgeable women I was referring to!!

Mixed BC: PILC with a little IDC thrown in to make things interesting. Extra nodal extension and LVI. Dx 10/11/2013, ILC/IDC, Right, 2cm, Stage IIIA, Grade 3, 9/9 nodes, ER+/PR+, HER2+ (FISH) Surgery 10/29/2013 Lumpectomy: Right; Lymph node removal: Right, Sentinel, Underarm/Axillary Surgery 11/14/2013 Mastectomy: Right Chemotherapy 12/4/2013 AC Targeted Therapy 1/30/2014 Herceptin (trastuzumab) Chemotherapy 1/30/2014 Taxol (paclitaxel) Hormonal Therapy 5/2/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 5/27/2014 Breast, Lymph nodes Surgery 10/5/2015 Prophylactic ovary removal Hormonal Therapy 8/8/2016 Femara (letrozole) Hormonal Therapy 9/20/2016 Aromasin (exemestane) Hormonal Therapy 10/23/2016 Arimidex (anastrozole)

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