PLCIS how aggressive is it?

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caligirl3
caligirl3 Member Posts: 86

Hello ,

I posted before that I was diagnosed with pleomorphic lobular carcinoma in situ in April 2014. I have since been trying to figure out what to do. So much conflicting information. What I have found out though is it can be aggressive and should be treated more aggressively than classic LCIS. My fear is, am I putting myself more at risk by waiting? How quickly does it progress to invasive cancer if not treated? Have I already waited too long? (I had a lumpectomy but margins were not completely clear). I also had an MRI in May that did not show invasive cancer. It will be 6 months in October.  I am scheduled for a mammogram then. It is so frustrating that there really is no clear path of treatment for this variant. I am leaning towards a PBM but am scared that I may have waited too long. Anyone have any insight on this? Specifically if there is any information on how quickly it can progress to invasive disease? Thank you!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2014

    mammograms do not show lobular cancer very well. An MRI is much better for that. As you are pleomorphic clean margins are important

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited September 2014

    One thing to note is that LCIS is not considered to be cancer. However, seeing it is pleomorphic, they may want to remove it.

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited September 2014

    Lily & Suzie, they don't "remove" LCIS, much less with clean margins. That is not how this condition works. It tends to be diffusely through the breast, often also bilaterally. It is a high-risk marker, not a discrete mass, and is usually found as an incidental finding with something else. On its own it isn't usually visible on imaging.

  • KellyMaryland
    KellyMaryland Member Posts: 350
    edited September 2014

    Hi Cali.  To put your mind at ease while you make your careful decisions, my timeline went like this:

    lump biopsied while newly pregnant with last child, benign result

    when that baby was about 6 months old, had lump removed (because I was nervous keeping it there, not because it was recommended), with finding of PLCIS.

    when that baby was two years old (after more biopsies but never again anything but benign findings), had PBMX, which resulted in nothing but benign findings.

    Despite the benign findings, for me, the PBMX was worth it.  For others, that may be too drastic a measure.  

    -Kelly

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2014

    caligirl----even though PLCIS is thought to be more serious than classic LCIS, most of the literature reports it "may" act like  DCIS. But even with most cases of DCIS, you still have time to think over your options, get medical opinions and make your decisions. (even with most invasive bc's this is also true; most bc is slow growing; there are only a very few bc's that require immediate decisions.) I don't have any specific info on the progression of PLCIS, but I remember my breast surgeon stating that my classic LCIS had <5% chance of becoming invasive over time.  (I chose high risk surveillance of alternating mammos and MRIs and preventative meds, which I  continue to do now , and I haven't needed any further biopsies or lumpectomies in all these 11 years. (keeping fingers crossed for upcoming mammo next week)--I took tamoxifen for 5 years and now still take evista.  You mentioned a recent MRI that was good, I think you could certainly just hang tight and see what your mammo results are. In all of this, have you maybe considered taking tamoxifen? Feel free to PM me if you want to talk.

    anne 

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2014

    melissa caligirl has already had a lumpectomy, hence my comment.......for anything lobular it seems anti hormonals have the biggest impact

  • leaf
    leaf Member Posts: 8,188
    edited September 2014

    I'm sorry you are going through this.  As with almost everything concerned with xLCIS, there is a lot of controversy.  

    In addition, PLCIS was only recently recognized.  (<Classic> LCIS was first described in the early 1940s; PLCIS was first described in the mid-1990s.)  Classic LCIS is normally multifocal (meaning there are normally multiple spots of it in a breast), and is often bilateral (meaning it occurs in both breasts).    They know this about classic LCIS because up to about 1990, they routinely did bilateral mastectomies on classic LCIS patients, and they could look at the mastectomy specimens. There is very sparse information about PLCIS, so I don't think they know whether the same is true for PLCIS.  Since PLCIS is somewhat related to LCIS, there is the possibility PLCIS is also multifocal and bilateral, but I don't think we know that for sure.

    1)This recent paper looked at 31 cases of PLCIS (with nothing worse found at the time of PLCIS diagnosis, and no history of anything worse than PLCIS). The article is under a paywall, so I haven't looked at the actual article. From the abstract, I'm not sure if they followed all 31 people for 12 years.  But anyways, after up to 12 years, they found 4 cases of invasive carcinoma, and they say they had 2 cases of 'recurrent' PLCIS. 

    http://www.ncbi.nlm.nih.gov/pubmed/24372322

    I wondered what 'recurrent PLCIS' meant, because, as others have stated, classic LCIS is often not detected on any imaging.  But maybe this next paper has more insight on this point.

    2)This review article (reviewing literature from 1996-Oct 2013- so the above paper was not included in this review) claims

    PLCIS is also regularly associated with comedo necrosis and
    calcification and hence is often mammographically detectable, in
    contrast to classical LCIS (CLCIS)[1-5].  

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC412762...

    Note the word 'often'.  So maybe PLCIS shows up more frequently in mammograms than does classic LCIS or ILC??  In their review, after initial excision, they didn't find any of the PLCIS patients had any recurrence worse than more PLCIS.  This second paper (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4127624/ ) recommends getting clear margins for PLCIS.

    So, we don't have much information at all, but in the first paper they found 4 PLCIS people (out of 31) got invasive carcinoma when they looked at them for up to 12 years.  That means that 27 PLCIS patients did NOT get anything worse than more PLCIS in a period of up to 12 years.

    There's a lot we don't know, but since they haven't detected any invasive cancer for you, I would consider talking to your docs, and consider antihormonals (at least if your PLCIS is ER+ or PR+) and/or re-excision to get clean margins for the PLCIS (as they generally recommend for DCIS) and/or mastectomy(s) and/or radiation.  (I doubt if it would be necessary to do both mastectomy(s) and radiation unless possibly they found something worse.)

  • Lily55
    Lily55 Member Posts: 3,534
    edited September 2014

    leaf, what a brilliant reply, thank you 

  • caligirl3
    caligirl3 Member Posts: 86
    edited September 2014

    Hello Ladies,

    Thank you all so much for your replies. It sure has been a stressful few months! I'm sorry you are all going through this as well. Thank you for sharing your experiences. 

    Lily55: Yes mammos don't tend to catch these lesions. Ive been having mammos and ultra sounds since I was 35 due to fibrocystic breast disease (that's when I found my first lump). The PLCIS was found incidentally after I had two cysts removed. A FNA biopsy that had been done a month prior to my removing the cysts had come back negative. It was only found at the margins of the cyst. Yes it is recommended to get clear margins for PLCIS.

    Suzieq: When it was first thought to be classic LCIS it was not recommended to go back for margins. Only when it was designated as pleomorphic was that suggested. I have mixed classic and pleomorphic types.

    Melissa: Yes as I stated above classic LCIS does not require clear margins but pleomorphic does. Are you doing high surveillance monitoring for your LCIS? Are you on Tamoxifen?

    Kelly: WOW I cant imagine having to go through this while pregnant. Thank you for easing my mind a bit. I am definitely leaning towards a PBMx. What worries me is that I still have multiple  small cysts in both breasts (shown on MRI). If you don't mind my asking what type if any reconstruction did you choose?

    awb: I'll have my fingers crossed for you too:)  SE's of Tamoxifen scares me because of family history of stroke and clots. Actually when it was first thought to only be classic LCIS thats what we were discussing. But when the pleomorphic aspect was found we started looking at other options more closely. How do you cope with the high surveillance cycle awb? Its only been 6 months and I'm a nervous wreck.

    Leaf: Thanks for always posting such a wealth of info (the little credible that happens to be out there). What scares me is that from what Ive read, with some of the pleomorphic that does become invasive, although rare, can become pleomorphic ILC, which is fast growing and tends to have a poorer prognosis. I do have a second opinion request pending at UCSF. Once I have my appointment scheduled and get more information, I will make sure to share with you ladies. I don't know if there is anything new on this subject. If there is I'm sure a leading research center would know about it. As for radiation, there is no evidence that it is beneficial for PLCIS. What also scares me is what if there is more that hasn't been found. I have the same question for you Leaf, how do you cope with the high surveillance cycle? How about taking Tamoxifen? any difficulties with that?

    Thank you all for your support. It helps when you can vent to others who are going through the same thing. Most people who are not going through it don't understand. Although I know they mean well, hearing "dont worry, at least its not cancer" or "just get rid of them( them being breasts) don't take chance's" does not help!

  • leaf
    leaf Member Posts: 8,188
    edited September 2014

    Yes, there is no evidence for the efficacy of radiation for PLCIS.

    a) sometimes they do radiation with DCIS, and several papers have mentioned they recommend to treat PLCIS like DCIS.

    b) In the second paper they do say

    . Of the 20 cases of PLCIS alone, three patients received radiotherapy,
    six had chemoprevention and one received both chemoprevention and
    radiotherapy...  

    The European Society of Medical Oncology also states, with regards to in situ
    lobular neoplasia, “radiotherapy is not warranted, perhaps with the
    exception of the pleomorphic subtype”. This statement is presumably
    made, based on the histomorphological similarities between DCIS and
    PLCIS, thus using DCIS-based data as surrogate evidence, but there is no
    data regarding the clinical efficacy of radiotherapy for PLCIS
    directly....

    Blair et al[46]
    recently published a survey completed by surgeons in the United States,
    regarding the management of positive margins in PLCIS cases. They
    report considerable heterogeneity in the management. Only 24% felt they
    would always wish to re-excise PLCIS at the margin. The survey did not
    address the reasons for the varied responses, but they postulate that it
    may be due to a lack of familiarity with this unusual variant of LCIS
    or an active decision to await
    better evidence to inform further intervention. Either way, such
    diversity in responses suggests a requirement for clearer evidence and
    guidance.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC412762...

    So I wouldn't be surprised if you get different recommendations from different breast surgeons.

    I only have classic LCIS; I do not have PLCIS. 

     As for tamoxifen, I didn't have any big problems.  I have some mild 'warm flashes' when I started tamoxifen, but I don't know if they would have occurred without tamoxifen as I was perimenopausal when I started tamoxifen.  I also had an endometrial biopsy or D+C or polyp excision every 1.5 years or so (all were benign) while on tamoxifen.  But, again, I had endometrial polyps before I started tamoxifen.  I have not had anymore polyps after tamoxifen.  I'm also now postmenopausal.

    Each person's experience with tamoxifen is different.  Some people have zero side effects; for others it makes their life so miserable they must stop.  If you are considering tamoxifen or other antihormonals, one advantage is that you can try tamoxifen, and if it makes your life miserable, you can stop taking it.

    I think its absolutely stupid and uncaring for people to tell you 'its not cancer' or 'its only your breasts'.  They do not understand the complexity of your situation.  You have every right to be scared and confused.  I wish there was a more clear-cut path for what to do.  I'm sorry you have to go through this.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2014

    caligirl-----early on, it was kinda stressful, but now I've been doing high risk surveillance for so long (11 years) that I'm so used to it. The only thing that really bothers me is the IV that I have to have with my MRI; they have a hard time getting IVs into me. Other than that. it's not a big deal to me. actually, the fact that I'm watched so closely, is comforting to me; if something is there, they will be more likely to find it early, when it is more easily treated.

    anne

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