just diagnosed with lcis

Welcome to our little LCIS club!  I'm sorry you have to be here, but I knew when I got diagnosed, I'd probably never meet anyone in person who had LCIS.

I think it would be fairly presumptuous for anyone to tell you which choice to make.  For one, we don't know what your breasts mean to you, and we don't know what other conditions you might have that might affect your decision.

Was your mother tested for BRAC2? If she tested negative for BRAC2, then it would be much less likely that you could have a BRCA2 mutation, though I would think it would be possible.  I don't know that much about breast cancer genetics, but if there are questions, then you may be able to get more information from a board-certified genetics counselor.  I went to a board-certified genetics counselor, and she gave me absolutely no pressure on which choice to make.  She said that some people who had BRAC1 and/or BRAC2 deleterious mutations (thus some had ~80% lifetime chance of having breast cancer) chose watchful waiting.  We are all different.

You certainly do NOT have to make your decision before you see the oncologist.  You can take as little or as much time as you want to make your decision. (At least you have considerably more time than our sisters who are initially diagnosed with invasive breast cancer.)  I chose tamoxifen in part because my breast surgeon flatly refused to do PBMs on me.  For some choices, you can make one choice and switch to another if you find it best for you.  For example, you can choose antihormonal treatment, and if it makes you feel horrible or too scared, you can stop it.

You can look at the pros and cons of each treatment choice.  For each option, if you search different forums here for different subjects, note that most people post when they have trouble with some course.  If they are having no problems with a choice, then they are less likely to post.  Some of the downsides of each choice include: 

a) watchful waiting: you will probably have a higher risk of breast cancer: in this recent study of a small group of DCIS and LCIS patients (the abstract does not say how many were in each group) about 8% died of breast cancer after 25 years.

http://www.ncbi.nlm.nih.gov/pubmed/24615647  I sure was surprised at the 8% number. 

b) Tamoxifen/antihormonals: Some get very serious side effects such as stroke or thromboembolism.  This recent paper, though, found of roughly 4000 women

Rates of myocardial infarction and stroke for patients on AIs or tamoxifen
did not differ significantly from breast cancer patients not on
therapy. The side effect profile of AIs in this community-based
population was similar to that seen in clinical trials   http://www.ncbi.nlm.nih.gov/pubmed/21881937

c) Prophylactic mastectomies: Do your research so you can be prepared if you might get lymphedema or have trouble reconstructing (if you choose reconstruction).

I'm sure others will share their experiences and outlook.

My thought would be, did your mom & sister meet with a genetics doctor for counseling or were they just referred for BRCA/BART testing? Are there other kinds of cancer in your family? There are genetic syndromes besides BRCA that predispose for breast cancer. I found that my geneticist was much better at determining my individual risk than the MO and I highly recommend the process. I was tested for two other genes before she BRCA tested me.

clwhite---- how was your LCIS  found?  ( core biopsy?  If so, they generally follow that with an excisional biopsy to make sure nothing more serious (DCIS or invasive bc) is in there along with it.  If nothing more serious was found, then there is no rush since it is non-invasive; so you can certainly wait 2-4 months or longer if you choose.  Even with my combined elevated risk from LCIS and my mom's ILC, all my docs felt bilateral mastectomies not medically necessary.  I went the route of high risk surveillance (I alternate mammos and MRIs every 6 months, with breast exams on the opposite 6 months.) and preventative meds. I took tamox for 5 years, and now I have been taking evista for over 4 years. I have tolerated both meds well with minimal SEs overall. Even though your mom and sister did not do well with tamox, you might do fine, there is not way to tell ahead of time. You could always try it and see how you do. good luck with whatever you choose.

anne

As awb said, you may want to consider whether or not you want to have a surgical excision, if you haven't had one already at your core biopsy site. Although this is controversial, as all things LCIS are controversial, unless your core biopsy strictly corresponds to your imaging, most papers I've seen recommend an excisional (surgical) excision after a core biopsy shows LCIS to make sure there isn't something worse (i.e. DCIS or invasive breast cancer) in the area.  In my case, I had maybe 2 tablespoonfuls of tissue taken out.  After about 6 months or a year, the only consequence I have is a very faint pink scar, barely visible.

In my case, I had my breast excision done in a same-day surgery, took that night off, and went to work the next night.  (I work the graveyard shift.)  This happened about 7 weeks after my core biopsy that showed classic LCIS. (It was over the holidays.)

In approximately 20% of classic LCIS cases, when they do these surgical excisions, they find DCIS or invasive breast cancer in the area.  Often, for this 20% where they find DCIS or invasive breast cancer, the DCIS or invasive breast cancer is not *at* the LCIS site, but adjacent to it.  If you are one of this 20%, you may not want to wait 4-6 months for treatment of the DCIS or invasive breast cancer.

Your oncologist, of course, would not do this surgery, if you so decide to have it.  It would normally be done by a general surgeon or breast surgeon. I think the vast majority of LCIS patients do get a surgical excision.  If you haven't already, you may want to discuss this with your doctor.

Almost everything about LCIS is controversial.  According to this paper, 'they' haven't even decided whether or not breast excision should be recommended after (classic) LCIS is found on a core biopsy.  So I've read, classic LCIS was first described in the early 1940s.You'd think they have some consensus by now, since if an excision is done, its usually done within a few weeks/months of finding LCIS on a core biopsy. (Its not like they need to wait 25 years to find out how many LCIS patients go on to get DCIS or invasive breast cancer.)

http://www.ncbi.nlm.nih.gov/pubmed/24246610

So, given that everything concerned with LCIS is controversial, is it a ticking time bomb? Well, the amount of increased risk that LCIS provides is also controversial.  I, with a weak family history and classic LCIS, was told by an NCI-certified center that my future risk for breast cancer was 'somewhere between 10% and 60%, but probably closer to 10% than 60%.' My oncologist said 'somewhere between 30-40%, and my genetics counselor said 40%.  (I have a relatively weak family history.)  So, assuming the ballpark risk is something like 30-40%, less than half of LCIS patients will ever go on to get DCIS or invasive.

Now, of course, you already have DCIS.  Now. from what I understand, LCIS is a different beast than DCIS.  LCIS is normally multifocal (meaning that it occurs in multiple spots in one breast) and often bilateral (meaning it occurs in both breasts.)  They know this because they used to regularly do bilateral mastectomies on LCIS patients, and they could sample the specimens.  Since LCIS is not reliably detectable by imaging, the only way you can 'remove all the LCIS' is to do bilateral mastectomies, and even that will leave some breast cells.  But, even if you leave the LCIS, probably less than half of the people go on to get DCIS or invasive breast cancer.  So, it is a 'ticking time bomb' for these ~~ 30-40%.  In the very few long term studies such as this

http://jco.ascopubs.org/content/23/24/5534.full.pd... they find that women with LCIS are still getting breast cancer some 20 years and more after an LCIS diagnosis.  But these numbers they are looking at are very, very small.  There are a few papers that looked at a handful or less of LCIS patients with radiation.

http://www.ncbi.nlm.nih.gov/pubmed/15691636

For the other ~~60-70% of LCIS patients, (classic) LCIS won't  be a 'ticking time bomb', because they will never get DCIS or invasive.  Of course, you already have DCIS.

Since its so hard to get any reliable answers to people with just plain classic LCIS and nothing worse, you can imagine what kind of data you are looking at for people who have both DCIS and LCIS. This paper looked at people with DCIS or invasive cancer who had (I presume classic) LCIS at the surgical margins. 

http://www.ncbi.nlm.nih.gov/pubmed/20727142 They had a ridiculously small sample group of 38, and concluded that '

LIN found at a margin on BCT showed a significant recurrent
ipsilateral disease. Our study supports the view that LIN seen at the
margin may play a role in recurrence.'  Regardless of whether you agree with this statement, it did say that sometimes/often pathologists do not even report that there is LCIS in a surgical margin if a person has DCIS or invasive breast cancer removed.

Do note that if you have risk factor A (such as DCIS) and risk factor B (such as LCIS) that does NOT NOT NOT necessarily mean that your total risk is A + B.  We just don't know because we don't have good data on people with both DCIS and LCIS (let alone people with just classic LCIS.)

In small studies, they have found that tamoxifen or other antihormonals may decrease the incidence of future DCIS or invasive breast cancer in patient with only LCIS by roughly 50%.  These studies, such as this one,

http://www.ncbi.nlm.nih.gov/pubmed/23117858 haven't been going on for very long, so we don't know how long the anti-hormonal effect lasts for LCIS patients.

It is classic if it is not pleomorphic.

Ok then I guess mine is not classic as it's described as "pleomorphic with associated density". Oh God, it's all so very overwhelming. *taking a deep breath* For now I'm off to the MRI clinic (and she gave me a large valium to take before, yah). 

Good points about the mammogram possibility, awb!  I would guess that 'Pleomorphic with associated density' refers to mammography rather than the pathologist's report.  I don't think I've ever seen 'density' mentioned in a breast pathology report, but have, of course, in mammogram reports.  However, this abstract refers to 'microvessel density' in human paraffin-embeded blocks. http://www.ncbi.nlm.nih.gov/pubmed/23534805

According to this article, you can have pleomorphic microcalcificatons  (or sometimes referred to as calcifications) on one's mammogram.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC279773...    As awb said (much more clearly than I did), mammograms are _not_ diagnostic; that's why they do biopsies when a mammogram is suspicious.  Pleomorphic microcalcifications are neither typically benign or malignant.

http://amclc.acr.org/LinkClick.aspx?fileticket=1_5...

Its the pathologist, looking at the tissue sample slides, that makes a breast cancer diagnosis (or breast pre-cancer or benign breast diagnosis.)  The only possible exception is sometimes the clinician, not the pathologist, makes a diagnosis of inflammatory breast cancer (which is rare, and they are _not_ considering in your case: you don't have the signs or symptoms of inflammatory breast cancer.)

Just as awb said: its important that you get this clarified with your doctor whether or not you have classic LCIS or a variant LCIS.  (Its also helpful to get a written copy of your pathology report.)

Hello, 

I too am new to this site. I was diagnosed with pleomorphic lcis in April. I have had fibrocystic breast disease for years. The lcis was found incidentally when I had a particularly large cyst taken out and sent for pathology. It is so discouraging that there is not much information or consensus in treatment for this type of lcis. I have learned from doing my own research that it can be a particularly aggressive entity. Am leaning towards a PBM. Im worried since I have so many cysts in both breasts that something else may be lurking undetected. Then I worry that PBM may be too aggressive? Its hard to talk about it because it is hard to describe. Im told its not cancer but puts you at a higher risk for developing cancer. From what I have read if it becomes cancer it is a very aggressive form. What to do? Thank you for letting me vent:)

Dear caligirl3

Welcome to the BCO Forums where we're glad you foundf usd but sorry you neded to.

Itbis a major decision you are contemplating that we hope our Topics and member feedback will assisdt in masking the best decision for you. There is plenty to read here but don't ignore the www.breastcancer.org main site with a lot of technical articles - use its search function for best results. 

Knowledge is empowering and leads to the best possible decision, so read quality sources but bewarte of Dr Google as there is a lot of bad information on the Internet. 

All our best wishes.

The Mods

Thank you all for responding. It is such a stressful time. I am leaning towards a PBM because I don't know if I can live with the stress of the unknown. For those of you who made the decision to have a PBM, how did you come to terms with that choice?

Mine was an easy and instant choice to do PBM, because I'd watched my mother, her sisters, and their mother go through BC; only my mother survived. I took LCIS as my personal early-warning signal and an invitation to pre-empt my turn with the family disease. I have zero regrets but I never want to minimize the gravity of taking this approach: it's a painful process, surgeries have serious risks, and you have to find ways to adjust to a radically changed body, even after reconstruction if you opt for that. Without the family history, I'm sure I would have wrestled plenty with the question of PBM vs. surveillance, and I don't know that I would have made the same choice.  This is a hard, hard question, caligirl, and I wish you the best in sorting out your options.

Good evening! I was just diagnosed earlier this week with LCIS. I had a BR two weeks ago today. I went in earlier this week for my post op appointment with my PS and she told me about the pathology results. I had an appointment with the Breast Health Center and a breast surgeon wants to have me see an oncologist to get started on tamoxifen for 5 years. I have been all over the Internet and have been patiently waiting to post to get the nerve up to post to get some answers. From what I have read about tamoxifen it does not sound very good at all. Side effects sound horrid. I understand what LCIS is and I feel like I'm sitting here waiting for a bomb to drop. Why would anybody want to take that drug for so long when they could just possibly get a PBM?

Hello Fussycat08,

I know exactly how you feel. I was diagnosed in April with pleomorphic LCIS. You have time to make a decision. Don't feel rushed. Do your research, ask LOTS of questions. No choice is a wrong choice. Do what you feel is right for you. It took me 6 months to make my decision. I wont lie, it was not easy. These wonderful ladies on this forum were a great help and offered valuable information and support. Feel free to ask me questions.

my ALH diagnosis 10 years ago was monitored with yearly mammograms and ultrasounds...my risk was 30% chance of bc when I reached menopause...fast forward 10 years...dec. 17 2013 a day after my 54 th birthday...diagnosed with ILC...lumpectomy with clear margins...LCIS in breast...chemo...rads...tamoxifen...

How I wish the docs would have paid more attention to my ALH and considered hormone blockers...but being 44 and no where near menopause, it was never really brought up...reached menopause when chemo induced it February 2014 at 54! so I learned the really hard way that we need to know our own crap...get our hands on all diagnostic mammos and path reports and READ them thoroughly!

Anyway...I am on tamoxifen now...mild hot flashes every now and then...nothing compared to the reality of living with bc and the fear of recurrence. So very thankful I am able to take a drug like that...

Facing my upcoming "cancerversary" and still say, "REALLY???".....bless us all. Rosie