PLCIS and excisional biopsy

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BayAreaGirl
BayAreaGirl Member Posts: 5
edited January 2018 in LCIS (Lobular Carcinoma In Situ)

I am new to the forum and my 2018 started (not so) perfectly. My mammogram showed pleomorphic calcifications and I was diagnosed PLCIS upon stereotactic biopsy. According to my surgeon, there are 33% odds of an upgrade to something more serious like ILC or DCIS given stereotactic biopsies often miss the suspicious mass and LCIS lesions are likely multi-focal. So I am scheduled for an excisional biopsy next week to take out entire area to see what it is.

I did a quite bit of reading only to find out PLCIS is a rare and less known variant of LCIS.

I live in Bay Area and my surgery is scheduled at Mills-Peninsula's Women's Center. So far Mill's staff seem very thoughtful and competent. However, given that ongoing scientific debate about how to manage on regarding PCLIS, I was wondering if I should switch to a research institution like UCSF or Stanford. If so, should I make the switch before the excisional biopsy? How competent is Mill's Pathology lab vs UCSF or Stanford?

Also, Would you recommend any clinical researchers on this field in Bay Area? One person mentioned Dr. Esserman in UCSF is an expert on high-risk lesions like DCIS, however, not sure if she accepts PLCIS patients. Any thoughts?

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  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2018

    The only hospitals I feel comfortable being treated at for cancer and other complicated health issues are University Hospitals due to being research facilities. I am currently being treated at UCDavis Medical Center in Sacramento with my latest diagnosis on 1/2/18 of Invasive Lobular cancer. I considered UCSF and Stanford also.

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  • BayAreaGirl
    BayAreaGirl Member Posts: 5
    edited January 2018

    What was your main decision factor choosing UC Davis? Is it mainly due to proximity to your residence? I know commute in Bay Area is terrible. Have you visited other institutions

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  • leaf
    leaf Member Posts: 8,188
    edited January 2018

    One thing you should consider _if_ you decide to switch is whether/how much your insurance will cover if you go to non-network doctors/hospitals. I have gotten non-breast care at UCSF, and I did have to pay out of pocket for lab work. Obviously, different insurance plans differ.

    (BTW, PLCIS patients can also get subsequent IDC or DCIS. https://www.ncbi.nlm.nih.gov/pubmed/28612228 Obviously these are incredibly tiny numbers, and it is unknown if the PLCIS was a precursor to the subsequent breast cancers. For plain classic LCIS, some subsequent breast cancers were genetically related to the previous LCIS, whereas in other cases, other breast cancers were genetically UNrealted to the subsequent breast cancer. So, at least some of the time, we don't know how LCIS puts you at higher risk of subsequent breast cancer.)

    You may want to read this https://www.nytimes.com/2015/09/29/health/a-breast... I think Dr. Esserman's philosophy is that many breast cancers that are detected would never be life-threatening anyway.

    I decided to be part of the Wisdom mammogram study, which is run (at least in part) by Dr. Esserman. (Not sure about my wisdom about this.) Of course, I do _NOT_ have PLCIS; I have classic LCIS. I do have an unusual breast /ovarian cancer mutation, but its not BRCA, but its in the BRCA pathway. (The breast cancer risk for this gene is NOT as high as for a BRCA gene mutation.) I was assigned to the 'individualized' group, so was assigned to the 'mammograms every other year' group. I'm not real excited about this assignment, but know that I will probably get yearly breast MRIs, since the Wisdom study is for mammograms only. But since PLCIS is controversially sometimes treated like DCIS, if you go with Dr. Esserman, you may want to be prepared for less screening than you expect (unless you find you have invasive or opt for bilateral mastectomies.)

    They don't do much long-term studies on LCIS because its very difficult to study. That may go double with PLCIS because its even more uncommon than classic LCIS.

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  • Veeder14
    Veeder14 Member Posts: 880
    edited January 2018

    Hi BayAreaGirl,

    Previously, UCDavis Medical group was my HMO, now I have PPO. Had services at the Cancer Center last year for Melanoma, and previously through Orthopedics for Swannoma tumor removed from my arm. The Orthopedic doctor saved my arm. I like the quality of the surgeons, so staying with UCDMC. I wouldn't feel comfortable with a non research/teaching hospital, there are more staff available even though some are resident doctors going through training.

    So my decision was mostly because I already was receiving services at UCDMC. It's really a hassle to drive into San Francisco even though miles wise UCSF is closer to Napa (where I live). My family uses Stanford Hospital but that's even a further drive.

    I checked out St. Mary's Hospital in SF before but that was only for Orthopedics. Wouldn't ever use Queen of the Valley Hospital in Napa, it's a small town hospital.

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