? for LCIS patients, did your diagnosis change after lumpectomy?

I have been on an every 6 month follow up schedule since my first mammo at age 53 (yes, I know I should have had it earlier).  This past April mammogram that showed a change and I had a stereotactic biopsy in May with diagnosed LCIS and ALH.  Later in May I had a lumpectomy which confirmed the LCIS and ALH but also showed ADH.  I had no symptoms of anything prior to this.  I have another diagnostic mammogram scheduled for early November to see how things look after the lumpectomy.  And the saga continues..........

It is natural to worry about this!  I certainly did.  The core biopsy only pulls a sample, so yes, it is  possible to find more upon exisional biopsy.  However, you have to take what you have in front of you rather than what might be imagined.

Have you had an MRI?  That might be another tool to provide more detail and show if there is something hidden. 

In my case, we were fortunate not to find anything worse.  Hope the same for you!

I was told that 20% of the time, lumpectomy pathology upgrades the biopsy pathology diagnosis. Good news is that 80% of the time, they find nothing new.

FWIW, my suggestion is to use the time between now and the 29th to focus on making yourself as strong and healthy as possible before your surgery. Exercise and eat healthy. You'll be that much ahead of the game physically. Emotionally, it's one of the few positive things we can do during the waiting time.

Be well. I'm hoping you're in the 80%. 

I think it  would be really neat to find the etiology of LCIS, and how it confers increased risk for breast cancer.  What caused our LCIS?

JanetM-They do know that only about 10-15% of breast cancers happen in people with a family history.   About 70% of women who get breast cancer have no obvious risk factors (besides being a woman.)  There are many young women on this website who have no family history, ate organic food, exercised vigorously, yet were diagnosed with advanced breast cancer and told they were 'too young to get breast cancer'.

Before I had my 'suspicious mammogram', I thought the only women who got breast cancer were women who ignored their breast lumps.  (This was even though I grew up knowing my grandmother had bilateral mastectomies and I was never supposed to say 'breast cancer' in her presence.) See what I knew, and I'm a pharmacist.

Leaf:  I'm with you on the etiology question as it relates to LCIS.  I can't let go of the link between sugar consumption and breast disease.  I can outconsume just about anyone in that arena, though the rest of my diet is mostly organic and vegetarian, I exercise, am of normal weight, no family history, etc.  I also had the Mirena IUD in for about 6 months before I found the original lump....grasping at straws I suppose. 

i don't know how to link or forward but google new york times article on sugar put out sometime this past summer.  also there is a thread on this site called Stopping Sugar Support or something similar- i think they reference some of the studies in their discussion.

I completely agree with Anne's post above, particularly about making your decision out of knowledge, not fear.  It took me years to really find out how little we really know about LCIS and breast cancer risk. Chuba's paper is probably the best as far as the long-term breast cancer risk of LCIS.http://www.ncbi.nlm.nih.gov/pubmed?term=Chuba LCIS

Note that before the mid-1990s, bilateral mastectomies were routinely performed on LCIS patients because they didn't know the natural history of LCIS, and before the mid-1990s, they hadn't done the studies for early INVASVE breast cancer that showed that (lumpectomy + radiation) was an option for many early invasive breast cancer patients as opposed to mastectomy.

I had to wait 3 months to get my initial appointment with an oncologist.

I would DEFINITELY get a written copy of your pathology report.  In particular, see whether you have 'classic' LCIS or pleomorphic LCIS.  (Pleomorphic LCIS is generally thought to be more aggressive than classic LCIS, though there are no studies I know of about long term prognosis of PLCIS.)   PLCIS is a rather recently formed category, say, since the late 1990s-early 2000s.  Classic LCIS was first described in the 1940s.

Well, tts probably as close as you can come with our current state of knowledge. (I assume you're referring to the Chuba study  http://www.ncbi.nlm.nih.gov/pubmed?term=Chuba LCIS)  But that may give you a ROUGH idea about your risk (assuming you don't have a strong family history.  A strong family history may put you at increased risk of breast cancer due to deleterious BRCA mutations. Women with a deleterious BRCA mutation can have a 60-90% lifetime chance of getting breast cancer, which is much more than the usual figures one sees for LCIS. Here's the usual guidelines for BRCA testing.  http://www.uspreventiveservicestaskforce.org/uspstf05/brcagen/brcagenrs.htm#clinical)

The Chuba study looks at LCIS patients.  Some LCIS patients have been mis-classified, so you aren't sure how many of those there are in the Chuba study, or if you have been mis-classified.  In addition, if you have PLCIS, that category didn't exist when most of these women were diagnosed.  So you don't know about that.

The Chuba study isn't a model, its describing women who were diagnosed with LCIS. The Chuba study didn't look at other risk factors for breast cancer, such as breast density.  And this is just one study.  The current technology for, say, mammograms, is better now than it was when some of these women were diagnosed with invasive breast cancer. Its arguably one of the best pieces of data we have. But its just one study. If you have other risk factors besides LCIS, such as being older, not breastfeeding, older age, then we have much less data.

However, if you look at breast cancer prediction models, which might contain other risk factors, the state of breast cancer prediction is in its infancy. It took me a couple of years to find out just how bad it is.

There is a study about the modified Gail model, which is the most widely used breast cancer prediction model.  http://www.cancer.gov/bcrisktool/       I know, I know, it automatically excludes women with DCIS or LCIS.  But let's just talk about say your risk for breast cancer BEFORE you got diagnosed with any breast condition.

The modified Gail model has been peer reviewed and compared against the appropriate groups (for example women of age X who started menstrating at age Y who have had Z breast biopsies and breastfed J number of years, etc.)

One study looked at the modified Gail model and was testing how well it worked in women in Florence, Italy.  (Breast cancer incidence varies in different geographical areas.)  In an 'Italian model' they also added other known risk factors such as breast density.  There are (at least) 2 ways you can measure a model like this. 

One way is by looking at the whole group: how many women got breast cancer, compared to how many women the model predicted would get breast cancer.  The modified Gail model did an EXCELLENT job at this.  The modified Gail model predicted 180 women would get breast cancer, the Italian model 186, and the actual number of women who got breast cancer was 194. So, they know very well how many women will get breast cancer in this group.

However, there is another way of measuring a model like this. They compare the model score of a person who got breast cancer with the model score of a person who DIDN'T get breast cancer.  They compare pairs of people, one from each group.That is looking at how accurate a model is in predicting an INDIVIDUAL's risk of breast cancer.  If a model is perfect, then in every pair, the woman with breast cancer should have gotten a higher Gail/Italian model score higher than the woman withOUT breast cancer. In this theoretical case, the concordance value would be 1. 

On the other hand, if a model was the worst possible case, then the model couldn't predict anything, and in half of the pairs the women with breast cancer would get a higher score than the women without breast cancer.  But in the other pairs, the woman withOUT breast cancer would get a higher score than the woman with breast cancer.  The model wouldn't predict anything.   In this theoretical case, the model wouldn't be able to predict anything any better than chance.The concordance value would be 0.5.

Well, both the modified Gail model and the Italian model had concordance values of about 0.59.  In the words of the article, the modified Gail model and the Italian model were better at prediction than the toss of a coin, but not by much. http://www.ncbi.nlm.nih.gov/pubmed/17148763  (click on gray-brown rectangle at the right to see the full article for free.)  If its this hard to predict breast cancer for an average US or Italian women, just imagine how well they know which particular LCIS woman will get breast cancer.

Some papers include DCIS with invasive cancer (i.e. something worse than LCIS) for getting breast cancer, and other papers exclude DCIS.

Most papers I've seen give a rough average of about the risk each year for each woman with LCIS is about 0.5-1%.  So that means that roughly 1 out of 100 or 200 women with LCIS will get breast cancer each year.  This is a really rough estimate, because the risk of breast cancer goes up as you age.  And we don't know which one of those 100 or 200 women will get breast cancer.

The mean age to get diagnosed with LCIS is in one's 40s or 50s.  So these women would normally have a lifespan of another 30 or 40 years or so.  So their lifetime risk of breast cancer (as a group) would be roughly 30 or 40% lifetime risk.

So, in this Chuba paper, about 7 out of 100 women who had LCIS and nothing worse got breast cancer over a 10 year period.  The data is worse the further back we go, because the pool of LCIS patients that got diagnosed 30 or 40 years ago is so small.  The Li et al paper also describes LCIS patients in the SEER study.  http://www.ncbi.nlm.nih.gov/pubmed/16604564  But in both papers, we don't know things such as how many women took estrogen and/or progesterone.  We don't have info about whether they got a 2nd opinion regarding their LCIS diagnosis.   But its what we have, and gives you some idea.

Thank you so much, Chocolate.  Your wisdom helps everyone here.