Just Diagnosed - PLCIS and ADH

I am so sorry you had to join our 'club', but welcome.  I am sorry we had to meet under such circumstances.

If this is a concern for you, you may want to ask how will your breast look after the excision.  (After my excision of about 2 tablespoonfulls, I can't tell the difference in my B cup breast, besides a small pink scar.  But different people differ of course.)

Are you OK with having the excision?  Studies I've read DO support getting (at least) an excision for PLCIS.  This is not to remove all the PLCIS (because that's impossible to do unless you do a mastectomy, and even then they can't remove 100% of the breast cells.)  They do an excision to try to ensure there isn't something worse going on. (In about 10-30% of cases they find something worse, namely DCIS or invasive.)

PLCIS is thought to be more aggressive than classic LCIS, and is sometimes treated like DCIS, although there is little info. 

Since you ALSO have a significant family history, I will be surprised if your Breast Specialist doesn't ask you if you want to consider BPMs (instead of or after your excision.)  *IF* you choose to do this (after your excision), there is no huge rush in making your decision.  (In other words, if they don't find anything invasive, you have more time to decide than your invasive sisters, if you want/need that time.) 

I am so sorry you have to make these decisions, but welcome to our group.

I think the problem with trying to 'remove all the PLCIS' is that I believe most classic LCIS, and I assume PLCIS is multifocal, meaning there are often more than one spot of it in one/both breasts.  Since PLCIS is (?sometimes/often?)  found as an incidental finding, it can be next to impossible to tell where it is except by looking at a tissue sample under the microscope.  Since you can't sample an entire breast without doing a mastectomy, that's difficult.

So, even if they got clear margins on this spot of PLCIS, there could very well be another undetected spot of PLCIS or LCIS in another place in either breast.

For classic LCIS women, *if* they go on to get invasive breast cancer, they often get it in an area that previously looked normal in imaging.  So that makes it difficult.  I assume the same thing can happen in PLCIS, but I'm not sure.  I know PLCIS can more often have calcifications, which may show up in mammograms.  But for classic LCIS women, the LCIS is often found not *at* , but adjacent to, the 'lesion of concern' (the reason why they did the core biopsy in the first place.)

Best wishes on your appointment today, Valerie!  Its good to get different viewpoints (including of course opinions that are 180 degrees from mine.)

Hmmmm.  Maybe she's hesitant to propose a game plan until she knows the 'enemy'. I sure don't understand her statement that 'PLCIS doesn't really mean anything'. 

I certainly hope that you don't have to make these choices, but if you did have invasive, I'd be wanting to at least get a consult with an oncologist to see whether or not I would need/want chemotherapy (as in chemos as opposed to anti-hormonals.  If you are post-menopausal, there are other anti-hormonals besides Tamoxifen.  (I'm not trying to push them on you, I just want you to be aware of all of your options.)

I'd certainly insist on a written pathology report, both of your core biopsy, and from the surgical biopsy.  Sometimes the core biopsy removes all or most of the abnormal area.

actually, calcifications are very common and most often benign. Even though you have PLCIS, some of these other calcs could still be benign, and others could be more areas of (P)LCIS, since (P)LCIS is thought to be a multifocal, multicentric, and bilateral condition. Meaning, if you have (P)LCIS in one area, you most likely have it in other areas in both breasts. Once you have (P)LCIS, essentially it is "always with you" unless you have bilat. masts (only realistic way to "remove it all"). (I'm not completely sure regarding ADH. but from what I know, that is more localized and more easily removed sugrically). I don't know if it is the "standard", but I would strongly recommend seeing an oncologist once you have your pathology report after the excision. (they are the cancer specialists, not the surgeons). An oncologist can help decipher your overall risk and the pros and cons of taking preventative meds. I would also recommend you consider genetic testing due to your family history of bc.

I was diagnosed with LCIS 8 years ago and I also have family history of ILC (mom) which further elevates my overall risk. I took tamoxifen for 5 years, now continue with evista for further preventative measures, and do high risk surviellance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. Glad to hear that you will be doing MRIs. (my insurance has paid for them all along the last 5 years, but suddenly this year I'm fighting to get it paid) Feel freee to PM me ifyou'd like to talk, I've been living with this a long time now!

Anne 

They don't know much about PLCIS, but for classic LCIS, as awb said, is normally multifocal and often bilateral.  So, as awb said, the excision is not so they can remove 'all the LCIS', but to see if there is DCIS or invasive running around.

*For those classic LCIS patients  who subsequently go on to get DCIS or invasive*, the DCIS or invasive often happens in a place in the breast where the imaging looked totally normal.   So most (not all) times the action of LCIS is like 'action at a distance'. (The increased risk of breast cancer that LCIS causes happens at a distance from the future DCIS/invasive lesion.) 

In contrast, in a *small* (no one will define small) number of cases, they think (?classic) LCIS actually morphs into DCIS or invasive.

From what I understand, DCIS normally occurs in one duct.  Ducts are (almost always) intertwining, but do not intersect.  So while they may curl around each other, and DCIS may occur in one part of a duct and not another,  DCIS usually doesn't occur in many different spots in a breast.  I know some people seem to have 'wide spread' DCIS in several sections of the breast, requiring a mastectomy, but I think that's unusual.  I think it is rare for DCIS to be bilateral, unless they think the 2 breasts developed DCIS independently.  Again, I may be wrong here.

In contrast with ducts, they don't know if lobules intersect and are interconnected.  In contrast with DCIS,  (classic) LCIS is often multifocal and often bilateral.

Here is an interesting, recent article about PLCIS, with a proposed pathway (Click on the links to Figure 6 in the discussion section.)  It is unclear whether PLCIS arises from CLCIS and represents a genetically more advanced lesion than CLCIS, or if PLCIS originates from a yet unidentified precursor lesion... Our findings are in agreement with a recent report by Reis-Filho et al. (20) and suggest that at least some PLCIS may evolve from the same precursor or through the same genetic pathway as CLCIS.     Of course, this is observational data only, and is not clinical data, so may be wrong. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2783988/?tool=pubmed.

From this paper, they also seem to suggest that apocrine PLCIS may have more chromosomal breaks and changes than non-apocrine PLCIS, so that's another reason to get the written copy of your pathology reports.

I also agree with Anne and Kelly that it is a good idea to at least get a consult by an oncologist. An oncologist probably *in general* knows more about the cell/molecular/medical basis of cancers than a breast surgeons.  Of course I'm generalizing here, but most surgeons are interested in doing surgery.  For the nonsurgical medications, in general, surgeons often just copy down the patient's ongoing meds.  In general, I think (I am a hospital pharmacist) most (at least general) surgeons do not understand drugs except those directly connected with surgery, and the few days after.  Surgeons understand electrolytes well, and all the meds connected with surgery, postoperative care, and bleeding, but they often don't understand other meds.  Oncologists (in general) don't have surgical training, and usually start with internist training, thus understand the pathophysiology more, and are more sensitive about the interplay between medications, side effects, etc.

So if you start bleeding or throwing up after a surgery, you'd want to call the surgeon.  If you want to address the complex controversy about PLCIS and classic LCIS (much of which is uncertain), I would go to an oncologist.  That's just my opinion, of course.

Hi Valerie,

 I was dx'd with PLCIS last November through an ex biopsy following LCIS dx the month before. You're right, this stuff is clear as mud. I can't add anything to what the others have said other than to let you know I'm with you in this weird club.

I go back and forth. Sometimes I feel like I really dodged a bullet, and now I'll be monitored closely enough that if I get invasive, it will be caught early. Then some days I feel like I have something pre-cancerous in my body that could go bad at any time. I got the B9 last year, but there was that "but."

I'm in the same boat financially. We have catastrophic insurance with an extremely high deductible. We are still paying off the bills from last fall. I would love to upgrade our policy, but I don't know if I can since I now have a pre-existing condition.

We differ in that I don't have the family history you have (I'm sorry about your losses). My surgeon and my oncologist gave me a 20% chance of getting invasive (how they determined that I do not know; I do not care. It's relatively low, and I'm accepting that for now). I think your chance would be higher because of the hx.

If you consider PBM (not suggesting it, it's just another option), see if you're a candidate for skin and nipple sparing surgery. I don't want the surgery. I just want to live my life with my mammos/MRIs every 6 months. I'm not taking tamox. But I'm also very well aware that if I do get invasive, skin/nipple sparing might not be an option. The only reason I've put this out here is that you asked for questions to ask your dr. I think it helps to know all the options.

Best of luck to you.