LCIS I am so confused!!

Shelton-----I was diagnosed with LCIS  (also by a biopsy for microcals) over 9 years ago and my risk is further elevated by family history of bc (mom had ILC). I  had a lumpectomy (which confirmed the LCIS and fortunately no invasive bc was found), took tamoxifen for 5 years, and now take evista for further prevention; I also continue with high risk surveillance of alternating mammos and MRIs every 6 months with breast exams on the opposite 6 months. (one done by gyn, one done by oncologist). Your doctors are correct---LCIS is stage 0, in-situ non-invasive bc (cancer cells contained in the lobules that have not spread into the surrounding breast tissue); it does have the potential to become invasive, but this is very very low; my breast surgeon quoted < 5%. so since the potential to become invasive is so low, most look at it as more of a marker for high risk rather than a "true" cancer. It is also true that it most often is found to be a bilateral disease, also multicentric and multifocal (if you have it in one breast, most likely  you have it in the other one and it can be widespread).

What exactly do the 2 breast surgeons disagree with regarding your radiology report? Mine was classified as BIRADS 5 and they used the wording "malignant" in my pathology report to describe what they saw. Even with my family history, all my docs felt PBMs too drastic, but I think what it basically comes down to is personal choice----you have to decide what is best for your particular situation (hopefully with the help of your medical team)---monitoring closely (with or without preventative meds) or bilat mastectomies. every choice has it's own pros and cons and it's own SEs and consequences for your life. For me, my choice to do surveillance and preventative meds  was and continues to be the right choice for me, but I am always open to  reconsider PBMs if anything more were to be detected. Fortunately, I have not needed to have any further biopsies or lumpectomies in all these years.

feel free to PM me if you'd like.

Anne

Breast surgeon says she has never seen LCIS "in situ" turn into invasive breast cancer

Well, that's because it really doesn't do that. LCIS is generally thought of as a marker or red flag suggesting you are at higher risk for getting invasive BC in your lifetime than the average woman. I disagree with the 10% chance since the average woman has an 8-12% lifetime risk. Unfortunately, you are no longer an average woman in the BC world. The good news is that you will likely get excellent care and superior observation. The bad news is you will never escape this red flag. It will be with you forever.

What pissed me off most about LCIS stats was that with each year, my chances of getting BC actually went UP. So each time I heard, "all clear," I was glad for about a day and then I got to worry again.

But my feelings were perhaps prophetic since I did end up with invasive. I have been to hell and back this year, but I am oh so glad to be off the roller coaster. So glad! My choice (PBM) is not for everyone. I also take tamoxifen because of the ILC, and I have to say it's not as bad as I thought. Not at all! It's a heck of a lot easier than PBM. However, that too never really ends. After your 5 years of Tamox are up, you have 5 years of something else.

You're right. This stuff is confusing at heck. I'm a little annoyed with some medical professionals who like to pat our heads and say, "it's really not that bad." It's not that bad, but it's damn serious. We're not babies. We can handle reality. Unfortunately with LCIS, we often have to learn that reality on our own.

Best of luck to you.

Hi Horselady.

it is confusing. can be daunting get your head around everything.

As written above, LCIS can be regarded as a 'red flag' a warning to watch carefully.

Whereas DCIS does very often spill out of your cells, and turn into invasive cancer.

I find it interesting though, that there is usually LCIS spill around an area of ILC anyway.

So, it might be good to search out, or ask your Oncologist for more detail as to exactly why.

The main thing right now, is that they are treating you, and will keep a good close eye on you in the coming years as well.

I want to wish you all the best for you surgery.

It's such a lot to take in.

My advice would be, write down any questions you think of, so that at your meetings with surgeon/Oncologist, you can ask away. It's easy to be overwhelmed at the time, and forget what you want to know.

Big hug, and remember,

you are not alone with this. :-)

xx

Astrid.

horselady-----when diagnosed with both DCIS and LCIS, your treatment will be focused on the DCIS as it is the more serious of the 2.  (Will you be having any radiation or taking tamoxifen? they are both frequently recommended for DCIS, depending on the specifics of your particular situation; radiation is  not given for the LCIS, but tamox is recommended for it as a preventative medication).  A wide excision lumpectomy (which I had when diagnosed with LCIS over 9 years ago) is done to make sure nothing else is lurking in there along with the LCIS---- (your  "something else lurking" was DCIS and has already been found).   While LCIS is also a  stage 0, in-situ non-invasive bc, it is not generally considered to be a "true" cancer, as it's potential to become invasive is so very low. It is thought more to be a high risk marker for risk for future bc. However, it does put both breasts at high risk. So the radiation is given for your DCIS, the tamoxifen will be needed for both your DCIS and your LCIS. I took tamox for the full 5 years and now take evista for further preventative measures; I continue with high risk surviellance of alternating mammos and MRIs every 6 months; I have not needed any further biopsies or lumpectomies in all these years. Feel free to PM me with other questions if you'd like.

Anne

Also, LCIS doesn't just up your risk for invasive lobular cancer - it increases your risk for invasive ductal cancer too.

LCIS is very, very confusing.  A lot is not known. I am not a physician or scientist.  But I do know that it is very difficult to study LCIS.

Questions about cause and effect are always difficult.  There is the problem of correlation does not imply causation.  Wikepedia has examples. http://en.wikipedia.org/wiki/Correlation_does_not_imply_causation

LCIS is hard to study for many reasons.  I'm sure there are other reasons and concerns that I'm not listing here.

  LCIS is usually only an incidental finding on a biopsy done for some other reason. Probably the most common lesion seen that leads to a diagnosis of LCIS is suspicious calcifications on a mammogram.  But most often, suspicious calcifications on a mammogram are benign, or DCIS, or early breast cancer; they are usually NOT LCIS.  So usually we can't see LCIS on a mammogram.   Sometimes/often LCIS is not found AT the site of a suspicious calcification, but near the lesion seen in the mammogram. LCIS not reliably seen on other imaging (sonography or MRI) either. The only 'gold standard' way we can diagnose LCIS is by looking at a piece of tissue under the microscope.  So the only way we really know a person has LCIS is by biopsying it. Since breasts are movable and LCIS can't normally be seen by the naked eye, the surgeon doesn't know where the edges of an LCIS lesion are. 

  Normally people with LCIS have many lesions of LCIS.  They know this because they've looked at mastectomy specimens of women who have had LCIS biopsies.

  So its very difficult to

    a) Know the incidence of LCIS -how many people have LCIS - the only way you know  if you have LCIS for sure is having a breast biopsy.

    b) Know the extent and locations of LCIS.  (So this makes it very hard to test if a spot of LCIS becomes invasive breast cancer.)  Remember, you have to remove the tissue you are biopsying, and that removes that sample.  So you may be removing all of the LCIS in that location.  Or you may only be removing a portion of that LCIS spot.  Or you may be removing a perfectly normal spot.

    c)  Breasts are soft, floppy things, so it can be difficult to tell the location of a lesion precisely.

    d) Even if you could locate the exact spot of an LCIS lesion, and even if you could tell that invasive breast cancer developed

     in that precise location, that (by itself) would not definitively say that LCIS causes the subsequent breast cancer.  Maybe some

     other factor caused the invasive breast cancer, or perhaps the same factor that caused the LCIS also caused the subsequent

     invasive breast cancer.  Or, perhaps, in some cases something that caused the DCIS/invasive could have caused the LCIS (as pointed out in the Wikipedia article.)

We do know that LCIS is a marker for increased risk of subsequent breast cancer in both breasts  (This incidence is probably not equal, which gives some footing for some people claiming that some LCIS morphs into subsequent breast cancer.)  This subsequent breast cancer can happen in places in the breast that look like they were perfectly normal in a mammogram.  But of course, we don't know if that place had LCIS or not, since we didn't biopsy it (and thus potentially remove all of it) before it became invasive breast cancer.

  That doesn't mean that everyone who has LCIS will go on to get DCIS or an invasive breast cancer.  Unless you have a rotten family history, or  have had severe radiation exposure, probably the majority (>50%) of LCIS women on average will never get a worse breast cancer (i.e. DCIS or invasive breast cancer).  We don't know how LCIS puts you at risk for an increased risk for breast cancer.  There might be something that causes both LCIS and the subsequent breast cancers.

I get the idea that most experts feel that *some* LCIS lesions can become breast cancer, because of clonality studies. This is one of the most recent papers  that looks at the clonality between LCIS and DCIS/invasive cancers. http://www.ncbi.nlm.nih.gov/pubmed/22776144

The increased risk of breast cancer probably extends throughout one's life.  But since LCIS was only discovered in the 1940s, and LCIS is an unusual disease, there hasn't been enough time or people to follow to study this really carefully.

Thank you for the link for Dr. Page.  I see I will have lots of reading to do, but from several things I've read, I can see I could be in trouble just from reading several of his writings.

I am wondering how long I might have already had these findings before the microcals showed up and called for the biopsy?  I guess I'll never know this.  I'm not happy.

Hi rosyFL-  Hope you had a happy holiday.

In response to your post,  I wanted to say that yes, you, or anyone, who has a DX of LCIS has a lot of research to do.  In these times of health care, we all need to be aware of the fact that we are in charge of our bodies and that we need to know which types of questions to ask in the face of our medical care.

I am responding not only as an LCIS patient, but as a health care professional (13 years experience as a Radiologic Technologist who performed mammograms, but also as an MS in Biology, and a college instructor of pathophysiology and Anatomy and Physiology professor at Penn State -Lehigh Valley and Moravian College, Bethehem, PA. ).

LCIS is an insidious character of a part of science which we do not have a world of knowledge.  There are few researchers in the field who have delved into this particular area.  From a personal standpoint I have read many articles which focus on LCIS.  They are few and far between and their results are not conclusive.

I can only say from experience that I have personally come to the conclusion (from my own standpoint) that PBMX is my only option to safeguard my future, as a MOM ( of 3 and stepmom to 2) and a wife and a grandmother (55 years old, DX at 49). 

Your future lies in your own hands......ask the questions you need to and the answers will come.

Sincerely, Marie 

I too have been recently diagnosed with lcis following a biopsy due to microcalcifications.  I'm 52 with a strong family history, mother deceased from bc and a first cousin died of bc at age 54.   I started tamoxifen about a month ago and am trying to get the courage to proceed with the surgery...I'm not there yet, and I just don't know that I ever will be, but if you look at the stats, it seems the right way to go.  Great breast surgeon, but as you said, there is no clear cut path here...

Hello Ladies,

I have my first six month f/u since being dx coming up in mid February and I need to ask a question from those of you who have been dealing with this longer than I have.  This visit will include a breast MRI and a clinical breast exam performed by my breast specialist. 

I have read (I believe it was the American Cancer Society) that if breast MRIs are performed - they should be done at a center that is equipped to perform biopsies of any suspicious findings in the MRI suite as those sites might not be found later at a separate biopsy procedure.  My dilema is that the hospital that my breast surgeon practices at does do the breast MRIs - but is NOT equipped to perform biopsies in the MRI suite.  In the interest of doing what is best for my health - do I travel away from my home (and my breast specialist) to find a center that does meet the criteria?  I have discussed this previously with my BS...and he has a lot of confidence in the radiology staff at the hospital, I don't want to overthink this and be one of "those" patients...but I do feel that I have personal responsibility to ensure I make the best choice.  I do like my BS and he has been very patient with all of my questions - but I would really appreciate any experience or advice that you ladies would be willing to share.

Thanks

If something is found on breast MRI, they generally do not do an immediate biopsy (there may be exceptions to this, of course), but reschedule for another time. It usually takes 3 to 5 days to get results anyway, then you get another appt for the MRI biopsy. It is probably a good idea to have your MRIs done at a center that is capable of doing MRI guided biopsies for consistency and carry-over. (I think that's what the ACS  meant, not that they had to be done at the same appt (which I think is quite unusual). I guess you have to decide which is more important to you, your established relationship with your breast specialist or the breast center's capabilities. I have been very fortunate and have not needed any biopsies in the almost 9.5 years since my LCIS diagnosis (and my risk is further elevated by mom's ILC); but I'm glad to know my breast center can do MRI biopsies if necessary.

Anne

I have had time to read the Chuba study that Leaf excerpts from above, but my own interpretation on reading it is that the risk of IBC after mastectomy following an LCIS finding is very low: less than 1% through twenty five years post surgery.  Leaf and I have exchanged PMs about this, and we both agree that it would be helpful if I share my interpretation of the study.

The excerpt Leaf posted said that:

Most patients (n =3,141; 68%) had partial mastectomy with or without axillary lymph node dissection. One thousand two hundred eighty-one patients (28%) had mastectomy (including total mastectomy, modified radical mastectomy, or radical mastectomy). ...Rates of IBC [invasive breast cancer] occurrence for patients with partial mastectomy were greater than with mastectomy, and the magnitude of this difference remained constant over time. At 10 years, the incidence rates were 8.8% for partial mastectomy compared with 5.7% for mastectomy (ratio, 1.5); at 15 and 20 years, the rates were 12.6% v 9.5% and 16.7% v 11.0%, respectively (ratio, 1.5; Table 5).

However, that high incidence percentage after mastectomy includes contralateral incidence after unilateral mx.  If you look at page 5537 of the report, in the text just underneath Table 4, it says: '...this intervention [referring to mx] was associated with dramatic (although not complete) reduction in the rate of ipsilateral occurences of IBC, with less than 0.5% to 1.0% ipsilateral IBC 15 to 20 years after mastectomy (P< .001). '   Then, if you check Table 6 on the next page, the risk of IBC after mx is divided into contralateral and ipsilateral risk.  The contralateral risks are, as Leaf pointed out in her post, not trivial, especially as the years go by.  But the ipsilateral incidence of IBC is less than 1% even 25 years out.

My interpretation of those study discussions/exhibits is that if you have a bmx after an LCIS finding, by definition it's the ipsilateral incidence percentages that are most applicable to your risk assessment.  In other words, the study found that the risk of getting IBC in the same breast (the ipsilateral breast) where the patient had a mastectomy is less than 1% over 25 years.  The IBC risk in the contralateral (other) breast (obviously for someone who had a unilateral mx) is 11%.  So, for those of us who have bilateral mx, when there is nothing more sinister at the time of surgery than LCIS, this particular study places us in that 1% category.

It's a well written study (thank you, Leaf!) and the full article is available from the link Leaf posted; not just the abstract, if you want to read it yourself.

OG56 and awb - thanks for the response and advice regarding the MRI, it so helps to hear from ladies who have been walking the walk! Its also good to know that if they do find something - that it isn't necessarily biopsied on the same day...funny how I assumed that just b/c they recommended a site that could perform MRI guided biopsies . 

I was diagnosed with DCIS and LCIS in July 2012.  After a HUGE amount of thought I decided on a Lumpectomy and radiation and I'm very happy with the decision.  I finished radiation January 18th-it was pretty easy and I've just begun taking Tamoxifin.  So far I'm doing fine on the med.  I will have a MRI next month to continue the follow up.  I guess this is what life post BC will be like.  I am 42 years old and worry about how Tamoxifin with affect my body.  I'm just so thankful that I already have my 2 children. 

ED2012,

Hi. So sorry to bother you. I have been searching this post since December but have yet to ask a question. When I saw your response to NCYM's, I thought it might be ok to ask an additonal question?

I turned 46 end of Nov/ and 1st of Dec doctor found lump, hard, didn't hurt, shape of lemon seed. mammogram showed nothing, ultrasound showed something, core biopsy showed ALH, breast surgeon reorder HIS pathologist to review core biopsy slides, upgraded to LCIS. ok, so here's my question. I had a lump and a core needle biopsy showing LCIS. But I had it all done at a different location that my breast surgeon. Now, my breast surgeon, who i do trust, is recommending an excisional biopsy. WHY OH WHY? do I have to keep having biopsies? can they not just monitor me or is it because of the lump found originally? Or because his office wasn't the one to do my original biopsy. They keep saying, this is not cancer, then why another larger biopsy? Why doesn't he recommend watching it? My Risk are as follows: invasive melanoma with no lymph node involvement, less than 3 yrs ago; mother's sister (aunt) died of breast cancer at my age; never had children;dense breast (but also very very tiny....lol)

I don't have alot of money, I'm single. I keep thinking, "take a vacation" and don't spend your money on another biopsy that will likely have the same result as the first biopsy? Your thoughts?

Oh and ladies, God bless you all. Your courageous, amazing, beautiful people. I admire you!

Thanks for everything!

Angie