LCIS and Risks?

 I don't know much about DCIS.  (I don't have DCIS.)

LCIS (at least without anything worse) puts BOTH breasts at risk, even if you only have 1 tiny spot in one breast.  Most cancers that LCIS (and nothing worse) patients get are NOT at the site they biopsied LCIS.  But since LCIS is usually multifocal and bilateral, its hard to say whether or not there was LCIS there.  (They probably know the multifocal and bilateral stuff because prior to about the mid-1990s, it was routine for all women with LCIS and nothing else to have bilateral mastectomies.  The know the pathology from these mastectomy specimens.)

ILC mirrors itself in the other breast more than happens by chance.

I think there is some info out there that the risk of bc for a woman with LCIS and nothing worse after PBMs is about 1-2% (down from about 1% per year for LCIS and nothing worse.)

I don't know that anyone knows that number.I'm sorry to hear this.

I only know about the Gail model.  (The Gail model also doesn't apply to women with LCIS, which I have.)  This professional journal opined that the Gail model does a job only slightly better than the roll of a dice for women AS AN INDIVIDUAL. Journal of the National Cancer Institute, Vol. 98, No. 23, December 6, 2006 EDITORIALS 1673

You may want to search Pubmed and see if there are any abstracts with people that have your particular circumstances.  http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed  This may require some time to find the article (if it exists.)   Pubmed is pretty picky about the specific search terms you use.

Sometimes detailed information will only be in the article, not the abstract.  Often the links on the upper right hand corner lead to a site where you have to pay to see the paper.    Sometimes I have been lucky in doing a Google search, taking hours, going through pages and pages of citations, and found a free website that contains a copy of the article.  When I've gone back again, the site has sometimes disappeared, so maybe its only up for a short period of time.

Even if you find a study that applies to you, different studies do differ.  Many times I do not know if these articles are randomized, peer reviewed, blinded, placebo controlled, pharmaceutical company sponsored, etc.

I think that one big reason that many people are given options in cancer care is that a lot is not known.  My oncologist, who is the head of his dept, says that cancer is like trying to find an item in a room without lights or windows, using a flashlight.  You rarely get to see the big picture.

Many places are extremely reluctant to give risk factor figures with LCIS and nothing worse.  My oncologist said about 30% lifetime.  (I think that is approximately correct.) When I went for a consult at a major medical cencer (NCI certified) they said it was somewhere between 10 and 60%, but probably closer to 10%.  If I wanted a more exact number, I'd have to go to journals. So I'm pretty sure since they don't know for LCIS alone, they have even less of an idea with LCIS and other conditions.  LCIS and nothing worse is an unusual condition though.

This paper opines that they need to do studies with long term followup for women who are found with LCIS plus micro-invasive cancer. http://www.ncbi.nlm.nih.gov/pubmed/12661895

And this one gives some number for invasive + LCIS or DCIS, but it does not fit your particular situation. http://www.ncbi.nlm.nih.gov/pubmed/18815880

I'm sorry you are going through these hard decisions.  

The Gail model is only for women who do NOT have a personal history of breast cancer. (No DCIS or LCIS either.)

http://www.cancer.gov/bcrisktool/

Here's a free link to the 'roll of the dice' editorial. I don't know how long the link will last - sometimes I've seen links disappear, so it may be wise to download it (if you are interested in reading it.) http://jnci.oxfordjournals.org/cgi/content/full/98/23/1673

I think different docs just have different preferences. I am not clear how often they are acting on the basis of studies.  Since I have read almost all l the Pubmed abstracts on LCIS with nothing worse, I doubt if they are coming from 'evidence based medicine'.  My breast surgeon said 'she didn't want to do any more surgery on me, and she would fall off of a chair if I wanted PBMs."  Many of the other women on the LCIS forum (with LCIS and nothing worse) have had PBMs recommended for them.  Some women with ALH alone have had PBMs recommended for them.  I don't think the recommendations have been consistent whether or not the patient has a strong family history of breast cancer.  (I have a weak family history- grandmother on one side, aunt on the other, both postmenopausal.)  

I figure that if they have this much uncertainty about predicting breast cancer for an individual in the general population who has never had breast cancer,then they won't have a lot better information for someone with an unusual breast condition like LCIS, or someone with multiple risk factors.

I wish it wasn't that way.  You may be able to glean some idea with specific studies in Pubmed, but studies do differ.

Your Dr is not making any sense. I would think with a history of bc- it is enough to get an MRI, I will have an MRI every year my bs said. Alternating with a mamo.My cancer was only seen on MRI. The orig mamo and US were negative. They just told me my bc was multi focal. I guess that means they are both primary??? I think sometimes the Dr's are lazy. They can get approval- but sometimes it is a matter of dotting the i's and crossing the t's correctly.