Topic: Pleomorphic LCIS

Forum: LCIS (Lobular Carcinoma In Situ) — Just diagnosed, in treatment, or finished treatment for LCIS.

Posted on: Jan 4, 2022 09:57AM

Posted on: Jan 4, 2022 09:57AM

Lileli wrote:

Help…Just received surgical excisional biopsy results which state "lobular carcinoma in situ, classic type, extensive" and "single focus lobular carcinoma in situ, Pleomorphic"

I was previously diagnosed with LCIS, ALH, FEA and ADH IN 2015 after an surgical biopsy and completed 5 years of Tamoxifen in 2020.

My breast surgeon is recommending I see my medical oncologist to possibly begin another round of chemoprevention. She did state a prophylactic mastectomy is also an option.

Wondering if anyone else was diagnosed twice with LCIS and whether or not the Pleomorphic LCIS finding pushed them towards a prophylactic mastectomy?

I will be seeing my medical oncologist in a few weeks and I am hoping this forum can help me come up with questions to discuss at that time.

Thank you

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Jan 5, 2022 01:42PM leaf wrote:

I'm so sorry you are going through this.

I have never been diagnosed with pleomorphic LCIS, but only plain, classical LCIS. I have been diagnosed several different times with the plain, garden variety LCIS (and also ALH.) This is because I've had many breast biopsies. This is very common, as LCIS is normally multifocal (meaning it often grows in multiple spots in a breast), and often is bilateral (meaning it is in both breasts.) They know this because before the 1990s, they commonly did bilateral mastectomies on anyone who had LCIS, and they could look at the mastectomy specimens.

Its really hard to study the natural history of LCIS. This means the study of how the first spot of LCIS forms, and what happens to it as time goes by. In large part that is because they can't reliably diagnose LCIS without removing a piece of breast tissue and looking at it under the microscope. When they have looked at people who have had both invasive and LCIS simultaneously in the same breast, roughly roughly ?30% of the time the invasive breast cancer and LCIS will have some mutations in common.

So, as far as I know, they don't know why LCIS often is multifocal and bilateral, or if/how LCIS turns into invasive ILC or IDC. They don't know how LCIS makes the people who have it at greater risk for future breast cancer.

I do not know what I would decide if I was diagnosed with pleomorphic, but so far with my classical, plain LCIS I have not chosen prophylactic mastectomies (at least yet.) But every person's situation is different, and we all feel differently about losing our breasts. So everyone's path will be different. You will make the best choice for you.

Best wishes, Leaf

Classic LCIS.If knowledge can create problems, it is not through ignorance that we can solve them- Isaac Asimov Dx 12/8/2005, LCIS, ER+/PR- Surgery 1/24/2006 Lumpectomy: Left Hormonal Therapy 7/15/2006 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

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