High risk & breast surgeon said yearly is ok. Advice please!

Monitor every six months can be mammogram and clinical physical breast exam alternating.

The NCCN guidelines for LCIS are once-a-year mammograms and once or twice a year clinical exams (for women who have NOT had bilateral mastectomies).  I get once-yearly mammograms and once or twice yearly clinical exams.   My oncologist doesn't want to see me anymore, some 10 years down the road after my LCIS diagnosis.  (I do _not_ have ADH or FEA, but I do have ALH and ductal hyperplasia, not atypical ductal hyperplasia.)

http://www.nccn.org/patients/guidelines/stage_0_br...

I think  they really don't know the increased risk of breast cancer for a woman with LCIS.  I think the modified Gail model is imperfect for individual women, even the 'average' woman in the US.

http://jnci.oxfordjournals.org/content/98/23/1673....

If they are this bad for the 'average' woman in the US, imagine how bad they are for a woman with a unusual breast condition like LCIS.  (The modified Gail model automatically excludes women with LCIS or DCIS, if you read the fine print.) When I had a 2nd opinion at an NCI-certified cancer center, they said that 'my future risk of breast cancer was somewhere between 10% and 60% - but of those two numbers it was probably closer to 10% than 60%, and if I wanted any better numbers, I'd need to go to the literature.)  Probably the longest term study of LCIS women is the Chuba study.They found The minimum
risk of developing IBC <invasive breast cancer> after LCIS is 7.1% at 10 years.

http://jco.ascopubs.org/content/23/24/5534.long

When I met with a genetic counselor (three years ago) after my ALH and ADH diagnosis, the GC felt my lifetime risk was about 50%. I do have the high risk family, with very early onset BC for my mother and aunt. Had I not chosen to have a PBM my screening protocol would have been the same as awb. In hindsight, I wish someone would have talked to me about tamoxifen in my early forties. 

hi pita  - I'm so sorry about your dx. You were quite brave to take the tamoxifen.  I hope things go smoothly for you.

I think the science of predicting who will get invasive breast cancer is in its infancy.  In addition, almost everything about LCIS is controversial.

Lifetime Risk of Developing Cancer: Approximately 12.3
percent of women will be diagnosed with breast cancer at some point
during their lifetime, based on 2009-2011 data. 

http://seer.cancer.gov/statfacts/html/breast.html

This is NOT NOT the risk of a woman WITHOUT any risk factors.  This is the risk of the AVERAGE woman.  The AVERAGE woman has some risk factors.

The article jnci.oxfordjournals.org/content/98/23/1673.long  is saying that in the case of breast cancer, although they know the risk of the general population quite well, they know VERY LITTLE about the risk of a particular woman in that group.  So, even if you were an 'average woman', they would know the risk of the GROUP of average women is about 12-13%, but they know about zilch the risk of the INDIVIDUAL average woman.

The resulting calculation produced a concordance statistic, whose value
could range from 0.50 (equivalent to
a coin toss) to 1.0 (perfect discrimination). The
concordance statistics for the Italian and Gail models were essentially
the same, approximately 0.59 (with 95% confidence
intervals that ranged from 0.54 to 0.63). In other words, for 59% of the
randomly selected pairs of women, the risk estimated
for the woman who was diagnosed with breast cancer was higher than the
risk estimated for the woman who was not.
Unfortunately, for 41% of the pairs of women, the woman with breast
cancer received
a lower risk estimate than her cancer-free
counterpart. Thus, for any given woman, the two models were better at
prediction
than a coin toss—but not by much.

If the data is this bad for the average woman, just think how  well we know about women with an unusual condition - LCIS.  Note: We don't even know how many women have LCIS, because normally LCIS is only diagnosed when a woman has a breast biopsy.  Many women do not have breast biopsies, and we don't know how many women are walking around with LCIS and don't know it.

______

It is NOT statistically valid to add risk factors together unless you have specifically looked at the group that has all those risk factors. If you have both risk factor A (LCIS) and risk factor B (ADH) that does NOT NOT NOT mean that your total risk is the risk for Factor A + B. Instead, they must look at the group of women who have both risk factor A and B, and see what their risk is.  

For example,at one point, this breast cancer predictor, which does add your risk factors together, predicted that my lifetime risk  for breast cancer (without tamoxifen) was about 88%. (I have a weak family history.)  Warning:  If you use this calculator, please do NOT have a heart attack. 

http://www.halls.md/breast/risk.htm   I have NEVER had anyone, or any paper that gave any number this high (without hereditary risk factors or radiation TREATMENT to the chest.)   Halls' breast cancer risk predictor specifically says it has not been compared to populations, has not been peer reviewed, and should NOT be used to make health care decisions.

I know of no papers that have looked at the lifetime risk of women with LCIS PLUS ADH, let alone LCIS alone.  So, unless you have a Significant family history, or maybe treatment for lymphoma, we really don't know your risk for breast cancer.

  The modified Gail model says

Although a woman's risk may be accurately estimated, these predictions do not allow
one to say precisely which woman will develop breast cancer. In fact, some women
who do not develop breast cancer have higher risk estimates than some women who
do develop breast cancer.

http://www.cancer.gov/bcrisktool/about-tool.aspx

If you don't have a significant family history (such as first degree relatives with breast cancer), then, as this  paper 

jnci.oxfordjournals.org/content/98/23/1673.long pointed out, the

models were better at
prediction
than a coin toss—but not by much.