LOOKING FOR LATEST INFO ON LCIS

The URL for Pubmed is http://www.ncbi.nlm.nih.gov/sites/entrez?db=PubMed

I hope that is true too, but the incidence of LCIS is so low that I doubt if they will have definitive answers in my lifetime.  LCIS was first described in 1941.  Up until the 1990s they were doing bilateral mastectomies on most LCIS patients because they didn't know the natural history of the disease.  They assumed it was the same as DCIS. They don't know a lot about what increase in risk LCIS gives a woman - I have been given values as low as a lifetime incidence of invasive bc of 10% (from a Major University) to about 80% (from a bc risk calculator that has NOT NOT NOT been compared to populations-so is highly suspect - since we know so little about LCIS.) Be forewarned- do NOT have a heart attack if you have LCIS and put your numbers into this calculator. http://www.halls.md/breast/risk.htm

It is hard to study since we don't know how many women are walking around with LCIS (and nothing worse) and don't know it.  We do know the diagnosis of LCIS has been increasing.

 For example, this study opines that the approximate incidence has risen from about 1:100,000 women-years to about 10 :100,000 women-years (in the highest incidence group) over the last 20 or 30 years. http://www.ncbi.nlm.nih.gov/pubmed/12353815

This study opined the incidence of LCIS has increased about 2.5 fold from 1980-2001 http://www.ncbi.nlm.nih.gov/pubmed/15824180

In the SEER study, there were about 7 times more DCIS (and nothing worse) patients as LCIS (and nothing worse) patients. http://www.ncbi.nlm.nih.gov/pubmed/16604564

So its hard to study since there are few women who have it, and we don't know who is walking around with it but doesn't know it.

Another thing about statistics in the http://www.halls.md/breast/risk.htm breast cancer risk calculator: it assumes that risk factors are additive.  That means that if you have 2 risk factors, A and B, it adds the risks together and assumes your risk will be A+B.

That is an assumption.  For the general population, some risk factors are NOT additive: the risk is NOT A+B; it is less.  (Alcohol consumption in the general population is one example.)

Theoretically, the risk factor for a person with 2 or more risk factors may be greater than A+B, or less than A+B, or A+B. 

AFAIK, there aren't studies with enough LCIS women to know if certain risk factors are additive. For example, as far as I know, they don't know if a strong family history confers an additional risk if you already have LCIS.  

That's why the  Hall risk factor calculator carefully states that this calculator has NOT been compared to actual populations.

Its one reason why the NCI modified Gail model specifically excludes LCIS - they don't know the risk of LCIS, or if LCIS plus other conditions confers more (or less) risk.

Yes, the Hall calculator adds your ADH, LCIS (the LCIS risk factor is probably pretty unknown), plus all the risk factors included in the questions (when you started menstruating, number of biopsies, etc.).  They have NOT compared your result of 72% with the actual people who have Your risk factors (ADH, LCIS, your age, your menstrual start age, your breastfeeding history,  your number of children,etc.)

The Hall calculator is probably more valuable for the women who have conditions that are more common.  If you look on the links on the Hall website, you can see that he created this in order to show the average woman how low her risk for breast cancer really is.

Yes, there are conflicting opinions on whether or not to consider LCIS as cancer or pre-cancer.  There are at least 2 areas of controversy in this issue.  a) Experts cannot agree how to define cancer in this setting and b)  Does LCIS fit this definition? 

Cancer is defined as 'uncontrolled growth'.  If all of the activity is within in the ducts and/or lobules (as happens with DCIS and LCIS), is that 'uncontrolled'?

But MOST (not all) oncologists classify LCIS as benign. " Strictly speaking, it is not known to be a premalignant lesion, but rather a marker that identifies women at an increased risk for subsequent development of invasive breast cancer."http://www.cancer.gov/cancertopics/pdq/treatment/breast/HealthProfessional/page6

A precursor for cancer would mean it is a lesion that is 'on the path' towards cancer.  A nonobligate precursor means that it is on the path towards being cancer, it is not cancer now, and in many, many cases it will NEVER become invasive cancer.  In other words, all LCIS spots are not destined, or fated, to become cancer. 

 Some women with LCIS will go on to get bc.  Because LCIS women are watched more closely, it is often found earlier than the average woman.  It is thought that in a small (no one wants to specify specifically) number of cases, eventually some LCIS spots will probably turn into invasive cancer.   Many people feel this because when they look at the DNA sequence of women who have both LCIS and invasive breast cancer, in a small number of cases, the LCIS spots have many of the same genetic abnormalities that the invasive cancer has. But, as the numbers at the bottom of this post suggest, the majority of women with LCIS will NEVER get invasive breast cancer.

Of those women who have LCIS and go on to get invasive breast cancer, their cancer usually  occurs not at the site of LCIS, but somewhere else in either breast.  (That's also why LCIS treatments are usually given bilaterally - both breasts are at risk, even if the other breast has no LCIS.) So that's why LCIS is usually thought of as a 'marker' of higher risk. We don't know why there is this 'risk at a distant spot', or 'risk at a distance'.  Its a weird disease.

Yes, LCIS is not invasive now.  In a small number of cases, a certain, particular spot of LCIS MAY (not will, but may) turn into invasive cancer.  

To give you some idea about numbers, here is a quote from this site:

"Results: The researchers found that between 1973 and 1998:

• 4,853 women were diagnosed with LCIS. Of these women, 350 were diagnosed with invasive breast cancer a year or more later." http://www.breastcancer.org/symptoms/new_research/111005.jsp

My risk according to the Hall calculator also were in the >80% risk range.   As I pointed out earlier, this is undoubtedly WRONG.    All of us get values above 70%, yet in the paper cited above 350 out of 4853 LCIS women got cancer over 25 years. 

If you estimate that our lifetime will usually not be more than 50 years (most LCIS is found in one's 40s or 50s), then, if it is linear, say double the 350 to make 700 people out of 4853.  That would mean that about 15% of these LCIS women got cancer, not 70% or 80%.

These 350 women are REAL PEOPLE, not theoretical values.  I doubt if all 3 of us have risk factors horribly out of average.    For example, I am single and have never had children, while some of the other posters have had children.

So the calculator may work well for 'average' women, but not for LCIS women.

Hi leaf,  thank you, you're so knowledgeable.  I'm trying to send you a Private message.