Risk of PLCIS in both breasts?

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TheSwedishOne
TheSwedishOne Member Posts: 7
edited March 2018 in LCIS (Lobular Carcinoma In Situ)

I'm preparing for a follow up visit at the doctor's on Wednesday. On Jan 24th I had a lumpectomy after a preliminary diagnosis of DCIS in my right breast. In the follow up visit after the surgery I was told I instead had pleomorphic LCIS and that the surgery didn't leave me with clear margins. On March 14th, I had a second lumpectomy.

I was told that we basically had two ways of treatment after the second lumpectomy:

1. Margins were clear and we'd move on to radiation.

2. Margins weren't clear and they'd recommend a mastectomy with reconstruction. I was told that approximately 1 out of 10 patients that had had two lumpectomies moved on to a third surgery (being a mastectomy) and that they wanted me to prepare myself mentally for the eventuality that I was that 1 out 10.

Now I've been trying to read up and I've talked to a friend who's gone through a mastectomy (but as part of treatment of breast cancer). But I don't seem to find much about PLCIS. And the effect of having a one-sided mastectomy instead of a bilateral.

Does anybody know about the probability of having PLCIS in both breasts? Or the risk of developing breast cancer in your left breast if you've had PLCIS detected, and treated, in your right breast?

Happy for any knowledge or thoughts. :)

Thanks,

Anna

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

    Well, if you're expecting reliable numbers, I'm going to disappoint you.

    Almost everything about LCIS is controversial, and that goes double for PLCIS. PLCIS is more unusual than LCIS.

    I did find this paper that said out of 7 (PLCIS or LCIS cases with pleomorphic features) cases, about half got breast cancer in the other breast by 67 months (which is about 5 years). This is a TINY sample size. https://www.ncbi.nlm.nih.gov/pubmed/28612228

    To me, I would not be surprised if bilateral PLCIS is common, since they know that bilateral LCIS is common. They know that LCIS is often bilateral because before around the 1990s, they routinely did bilateral mastectomies on LCIS women, and they could look at the mastectomy specimens. (Note that pathologists were just in the process of developing a category for PLCIS in the 1990s, so undoubtedly some (small) number of patients diagnosed with LCIS before around 1990 probably did have PLCIS in addition.)

    Note not all pathologists agree: even recently (2015) there is this paper that found when a group of 3 pathologists looked at a SINGLE biopsy slide (which would be really unusual - they would normally have many more slides than that to look at) - all 3 agreed on a diagnosis about 75% of the time. https://www.ncbi.nlm.nih.gov/pubmed/25781441. "...overall agreement between the individual pathologists' interpretations and the expert consensus-derived reference diagnoses was 75.3%, with the highest level of concordance for invasive carcinoma and lower levels of concordance for DCIS and atypia" In other words, its usually fairly easy to diagnose invasive breast cancer, but its more difficult to diagnose DCIS or atypia.

    I don't want to go hunt for the references now, but around when I was diagnosed with classic LCIS (2005), there was controversy about the definition of classic LCIS - such as how many atypical cells you see in a lobular sac (if I'm using the right terminology.)

    We don't know much about PLCIS, but at least in classic LCIS, they do know that often subsequent breast cancers that occur in classic LCIS, they often form not at the known LCIS site, but elsewhere in the breast, that looked totally normal previously. LCIS is really hard to study because it doesn't RELIABLY show up in imaging, so we don't have any good way of knowing if the area that now has DCIS or invasive breast cancer previously had LCIS. They used to say that LCIS was usually a MARKER of some unknown risk factor that put both breasts at increased risk of breast cancer.

    I think most/almost all docs feel that PLCIS is more aggressive than classic LCIS. And they know that ILC (invasive lobular carcinoma, which apparently you DON'T have) is more frequently bilateral.

    Whether or not to have a mastectomy is a very personal decision. Weigh the pros and cons, and take the information and your feelings about a mastectomy to your decision. There is no RIGHT decision for everyone in this matter.

    Best wishes,

    leaf


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

    I guess that sometimes/often? PLCIS is more detectable than classic LCIS by mammogram, since DCIS is ?often picked up by mammograms.

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  • TheSwedishOne
    TheSwedishOne Member Posts: 7
    edited March 2018

    Thank you for replying, leaf! I was secretly hoping for you to see my post. :)

    You confirmed what I though; that nobody seems to know much about PLCIS and that reliable numbers can't really be given about risks and how it behaves. Which really frustrates me, being an engineer as I am. :)

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  • TheSwedishOne
    TheSwedishOne Member Posts: 7
    edited March 2018

    Update on March 28th:

    My second lumpectomy was successful with clear margins! I'm moving on to radiation therapy in May. :):)


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

    Woo hoo for your clean margins!

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  • Barbara1120
    Barbara1120 Member Posts: 11
    edited March 2018

    Leaf,

    On behalf of all of us who have been diagnosed with LCIS or PLCIS, thank you for another informative post. At one point in your comments, you say that “they USED TO (my emphasis) say that LCIS was a MARKER of some unknown risk factor....”. Is it the case that the previously-held belief that LCIS is a marker of an increased risk for breast cancer is no longer believed to be true? I may have misunderstood what you meant, or what you said.

    Thank you!





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

    You make excellent points, Barbara - I was unclear. I was putting all these caveats in there because I am not sure of the current thinking: who do you take as 'the authority'/expert opinion?

    Up to Date is a commonly used database, and they say: Proliferative lesions with atypia include atypical ductal hyperplasia (ADH), atypical lobular hyperplasia (ALH), and lobular carcinoma in situ (LCIS). These lesions are considered high risk because they are associated with an increase in the patient's future risk of developing breast cancer [1]. While there is evidence to suggest that at least some of these lesions may be nonobligate precursor lesions [2], they are generally managed as risk indicators rather than precursor lesions, as the cancers that subsequently develop may occur in either breast and not necessarily at the site of the atypia https://www.uptodate.com/contents/atypia-and-lobul...

    There have been genetic studies that compare LCIS with nearby invasive breast cancer, and Sometimes (not always) the two - LCIS and invasive breast cancer - are related genetically. Other times they are not. If they are related, then the LCIS might be a precursor to the invasive breast cancer.

    I can't find other 'expert opinion' papers right now.

    Good questions!

    leaf

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  • Barbara1120
    Barbara1120 Member Posts: 11
    edited March 2018

    Thanks so much, Leaf. In the past few weeks, I had an excisional biopsy for asymmetry in one of my breasts and they discovered classic LCIS and nothing invasive. Frankly, my BS who I admire and trust, while not exactly dismissive was somewhat nonchalant about the finding. About 2 weeks earlier, I had been diagnosed with DCIS in my other breast and she said that was a more "significant" (my words) diagnosis and even that was manageable. In doing research on LCIS, I find that the more I read, the more confusing I find the information. It seems to be all over the place. Most everyone on the boards seems to have read the same information that I have, namely, that LCIS is a marker but I just read some information from the Susan Love website which refers to a couple of studies that indicate LCIS may in fact be a precursor to cancer and not simply a marker. Great.

    I have a question which I will ask my RO next week but wonder if you or anyone has some insight. If LCIS is commonly multifocal, does that mean that multiple "spots" of LCIS (in the same breast) does not necessarily mean that one is more at risk for developing cancer than if there is only one "spot" of LCIS?Is there a tippling point where one has so much LCIS that it's tantamount to a big red flag - you're going to get cancer! - and PBMX is the wisest course of action. I imagine this may be hard to answer as LCIS does not show up on imaging so who knows how much LCIS might be lurking in a breast - or who, in fact, has LCIS. Thank you in advance for any thoughts you might have on this.

    Barbara

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