New... What the heck is LCIS

myajames

Ok.. So I know what it is. Barely.

This is what I know so far:

ER+ PR+ HER2+

I have a palpable lump that was biopsied. About the size of a grape. No idea how many centimeters that is. I'm guessing 2?

Next step is to meet with surgeon and team to discuss treatment options. The doctor would also like for me to have an MRI.

I know what the ER+ and PR+ means in relation to hormone therapy, but am unsure what the significance of HER2+ is.

Any other questions I should ask?

MelissaDallas

Hy Mya. Do some reading on some reputable sites, like Johns hopkins, Memorial Sloan Kettering or Mayo Clinic to get more understanding about LCIS. It is a not-greatly understood "marker" that means you may be at greater risk for developing breast cancer. Was your biopsy just a needle or core biopsy? If so, the usual plan is to do a surgical biopsy to make sure there is nothing worse lurking in the area. About 20% of the time cancer is found on the excision. If nothing worse is found then you would be monitored more closely in the future and perhaps be offered an antihormonal drug to reduce your risk.

leaf

In addition to MelissaDallas' excellent advice:

Do look at your pathology report to see if they refer to your LCIS as classic (luminal type A or or a variant (pleomorphic, florid or macroacinar, necrotic, or signet cell.) (Some pathology reports won't say, and some pathologists may disagree between each other.) Most LCIS is classic (luminal A or .

re HER2:

http://www.breastcancer.org/symptoms/diagnosis/her... Almost everything we know about HER2+ is from association with invasive breast cancers.

This site (from 2011) talks a lot about histology, which you don't have to know. (E-cadherin are a protein on the outside of some breast cells that acts like velcro: sticking cells together. That's probably why invasive ductal carcinoma normally forms lumps, whereas invasive lobular carcinoma normally forms sheets, which is harder to feel/detect.) http://www.ucsfcme.com/2012/slides/MAP1201A/18YiCh... says more HER2+ is found in pleomorphic LCIS (PLCIS) than classic LCIS.

Almost everything about LCIS is controversial, and that goes double with the LCIS variants. I don't think we know much definitely about HER2+ in LCIS, at least HER2+ in classic LCIS. (At least I can't find much in Pubmed. http://www.ncbi.nlm.nih.gov/pubmed ). I sure wouldn't start out with Pubmed because these are academic papers, and the learning curve is very steep. As Melissa said, start out with reputable sites to get a general understanding.

Moderators

Hi mya and welcome to Breastcancer.org!

In addition to the great advice you've been given here, you may also want to check out the main Breastcancer.org site's pages on LCIS — Lobular Carcinoma In Situ, which has a wealth of information about this type of diagnosis.

We hope this helps!

--The Mods

myajames

Thank you ladies so much for the help. I feel as if maybe I over googled, as I feel more knowledgeable and more confused. My general understanding is that while LCIS is not Cancer, it's like Cancers introverted little cousin. Not very social, likes to stay at home.

What I am most confused about is that LCIS is typically multifocal, and not associated with lumps. However, my Core Needle Biopsy was done in a palpable mass (the kind of mass that makes doctors really nervous). I understand why this would require an ex. biopsy, however am curious if LCIS could be everywhere... what other purpose does the surgery have? Also, given the mass... should I not push off surgery? I have a trip to Manila planned in December and prefer to wait until after I get back before I surgery.

Should I ask if they were able to identify the mass? Would the mass have it's own pathology independent from the LCIS?

Sorry for all the questions. My gut is telling me that something else besides LCIS is going on with Mr. Frankenboob (that's what I call lefty). I want to make sure I ask all the right questions on Monday.

Anonymous

mya----if there was something else in the lump besides LCIS, it most likely would've shown up in your original biopsy. (but not always). So the purpose of the lumpectomy, is to remove the entire lump and some more tissue around it to make sure nothing more serious is in there along with the LCIS. (such as DCIS or invasive bc). When I was first diagnosed with suspicious microcalcifications on mammo, they wanted to do a biopsy right away (I think that suspected DCIS or invasive bc, I had a BIRADS 5), but I had a family trip all planned and paid for to Europe. My gyn said "most breast cancers are slow growing, take 6-10 years to even get to the size to be felt, so it's OK to put it off for a few weeks, but just don't wait several months". I had the stereotactic core biopsy the day after getting home from vacation, a lumpectomy about 3 weeks later, and met with an oncologist and started tamoxifen a month after that. (so my lumpectomy was about 6-7 weeks after the first mammo, before the callback). Even those with invasive bc on initial biopsy, sometimes have many weeks before surgery . So definitely talk it over with your surgeon. I was daignosed with LCIS over 12 years ago, my risk is further elevated by my family history of bc (mom had ILC and still doing very well 29 years later!); I took tamox for 5 years, I still do high risk surveillance of alternating mammos and MRIs, and now take evista for further prevention.

anne

leaf

You're not the only person who is confused! I think LCIS is a weird disease, and even the experts don't understand it well either.

Yes, you're right, almost no oncologists consider LCIS as cancer. (It also depends on how you define cancer. Some people define cancer as 'uncontrolled growth', but obviously you can't see uncontrolled growth in a slide where the cells are dead. Some people describe cancer as having the capability of metastasizing outside the organ. LCIS definitely cannot metastasize.

If LCIS is found in a needle or core biopsy (probably the most common case), then they may or may not (this is still somewhat controversial) excise the area. They excise the area NOT to remove the LCIS, but to see if there's something worse (DCIS or invasive breast cancer) in the area. They normally treat DCIS or invasive breast cancer differently than LCIS. So your treatment course would probably change if you had both LCIS and ( DCIS or invasive breast cancer.)

Most of the time LCIS is found as an incidental finding. But for some women (like you) LCIS was found as a lump. They found mine because I had 'suspicious microcalcifications'. I haven't heard of doing a breast biopsy for no reason. There's usually some reason (whether found on clinical exam or mammogram or ultrasound) why they are doing a biopsy.

There are very few 100%s in breast cancer. I've never heard of a breast that is 100% LCIS. But its very common that there are multiple spots of it in a breast.

I had my core biopsy finding LCIS in early Dec (about Dec 8), and I couldn't schedule my excision before ~Jan 25. Even women with known invasive breast cancer normally have ~1-3 months to decide what to do (except for really aggressive situations like IBC.) Since it sounds like you don't have any known invasive breast cancers, I don't see any harm in waiting. (Most invasive breast cancers have been in the breast for some 5-8 years (not a typo) before they can be detected by ANY means. So waiting a few more weeks/months probably won't make much difference.)

You'd have to look at your pathology report to see if the mass had an independent diagnosis from the LCIS. I've heard of fibroadenomas that had one spot of invasive cancer on one side, but I don't think that's common at all. Of course, I'm not a surgeon or a pathologist, so I don't know what these samples actually look like to the naked eye.

In this 1991 paper, about 60% of the LCIS cases were bilateral. http://www.ncbi.nlm.nih.gov/pubmed/1847343

In another 1991 paper, Sampling of a single breast revealed multifocal disease in 70% (96/138). When both breasts were sampled, bilateral foci were found in 50% (41/82)...Microcalcifications were an indication for biopsy in 49% (20/41) of breasts with a mammographic abnormality, but were a nonspecific finding often found in tissues adjacent to foci of LCIS. The mammogram was normal in 44% (32/73) of breasts with foci of LCI http://www.ncbi.nlm.nih.gov/pubmed/1853802

These are tiny sample sizes, but of this study (2003) of multifocal LCIS or DCIS, Separate foci of high-grade (comedonic) DCIS were found to be monoclonal in nature. On the contrary, definite evidence favoring the origin from different cell clones of separate carcinomatous foci within the same breast was obtained in 2 cases of low-grade DCIS and in 6 cases of LCIS http://www.ncbi.nlm.nih.gov/pubmed/14652818

This 1984 paper claims Lobular carcinoma in situ has a 60% to 90% rate of multicentricity, and about 4% to 6% of mastectomy specimens from patients with LCIS have an invasive cancer elsewhere in the breast. http://www.ncbi.nlm.nih.gov/pubmed/6692278

Note that when they sample a breast, they don't take the ENTIRE breast and look at EVERY spot under the microscope. They take samples. I imagine they would sample lumps and things that looked different, but since (apparently) LCIS doesn't look anything different than normal tissue, they will probably miss some spots.

Its really hard to tell (in a living person) how many spots of LCIS they have because the LCIS spots often look just like normal tissue under the naked eye. So the surgeon wouldn't know where to sample.

LCIS is an unusual condition. No one wants to make a guess how many people have LCIS, because we don't know how many people are walking around with LCIS and don't know it because most people don't get a breast biopsy. This says there are about 3/100,000 women. http://www.cancernetwork.com/cancer-management/sta.... When I got my call about LCIS, the radiologist said, "You have LCIS. Do you know what that is?" and I said "Yes!" because I had been reading this site. But I calculated from the number of biopsies my place (a local hospital in the USA) does them that they might find 1 to 3 cases in a year. So that's why he said, "Do you know what that is?"

Questions welcome, especially if I didn't answer them. (Obviously I ramble.) Best wishes as you climb the steep learning curve.

myajames

@Leaf @awb

You have been very helpful. I feel good waiting until after my trip to Manila to schedule surgery. I will of course get the docs opinion, but feel more comfortable even asking the question. I was initially worried about it being HER 2 Positive, but from what I read, there doesn't seem to be a difference in treatment.

Looking forward to Monday to see my path report and seeing what the doc recommends.