ALH is NOT cancer, right?

Ginger is right - ALH is not cancer.  It just puts you at somewhat higher risk for breast cancer than the average woman. 

About what your numbers mean: I bet you (or your doc) put your numbers into the modified Gail model as seen at http://www.cancer.gov/bcrisktool/ 

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The next part of this post describes how little we know about breast cancer prediction.

There is a medical journal editorial here (from 2006) that gives you some clue as to how well the Gail model works for predicting YOUR individual risk of breast cancer. http://jnci.oxfordjournals.org/cgi/reprint/98/23/1673.pdf

It shows that the Gail model (and an Italian model) worked quite well to predict how many women in a population (of Florence, Italy) got breast cancer.   The models predicted that 180 or 184 women would get breast cancer, and they observed  194.  Very good.  They know how many oncologists they need for breast cancer.

But there is another way, also, that cancer prediction models are assessed.  They take one randomly selected person from the group with breast cancer and compare her to one randomly selected person from the group withOUT breast cancer.  So you have 'pairs' of women, and you compare the scores they got from the model.

If the model worked perfectly, then in each pair of women, the woman with breast cancer would get a higher score than the woman withOUT breast cancer, and the concordance statistic would be 1.  If the model didn't work at all - half the time the person with breast cancer got a higher score than the person withOUT breast cancer, but half the time the person with breast cancer got a LOWER score than the person withOUT breast cancer, the concordance statistic would be 0.5.   If the model had a concordance statistic of 0, then it would be an excellent model, because it would still predict the outcomes perfectly.  For the Gail and Italian models, the score was about 0.59.  This means that for 59% of the pairs, the woman with breast cancer got a higher score, but in 41% of the pairs, the woman with breast cancer got a LOWER score than the woman withOUT breast cancer.  They described the models as "Thus, for any given woman, the two models were better at prediction than a coin toss—but not by much."

Yes, you are at higher risk than the average person to get breast cancer.  You shouldn't miss any screening.  That doesn't mean you are at high risk.  For example, the ACS puts ALH in the category of 'moderate risk'.  http://www.cancer.org/docroot/CRI/content/CRI_2_6X_Non_Cancerous_Breast_Conditions_59.asp

Before you get too afraid of numbers you see thrown around, you may see numbers like 'ALH carries a 4-5 x normal chance of breast cancer.' (A relative risk of 4-5.)    That is 4-5 x the risk of a woman WITHOUT ANY PARTICULAR RISK FACTORS (besides being a woman).  

So the 4-5 x is NOT NOT NOT 4-5x 12% the risk of the average woman = some 50-60%.

It is 4-5x the risk of a woman without any particular risk factors which is something like 3-5%.  So 4-5 x 3-5 = about 15-25% lifetime risk of breast cancer.  

That's using our Gail model predictors -  which are accurate for a particular woman about 60% of the time.   If you had a severe family history of breast/ovarian cancer, then they might be able to predict more accurately because you'd be more likely to have a known BRCA mutation.  Women with a known deleterious BRCA mutation have about a 55-90% lifetime chance of having breast cancer.  There are probably breast cancer genes out there that have not been identified.  But since you have no family history, that's probably not very relevant.

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One thing you may consider doing, if you have not already had this done, is consider if you want to excise the area.   There is some controversy in that decision.  For example http://www.pathologyoutlines.com/topic/breastalh.html

I agree with Ginger - its good to get the onc's take on what you should do.  You have a more complex situation since you've been told to continue to take estrogenic hormones for your endometriosis.

Keiko, Do you have any family history of BC/OVCA? ALH is considered a pre-cancerous lesion by most within the oncology community and a bit more "active" than ADH. Combined with a family history, your risk may be over 25%. Be vigilant and consult with an onc. as recommended! Best wishes. Glad you have f/u imaging in 6 months too, as this is considered standard of care following a biopsy.

The A in ALH state for atypical meaning unusual or irregular. Your biopsy has indicated that you have irregularly shaped cells which is of concern. Thankfully the ALH is not cancer.  The irregular cells can remain the same as they are now or they could evolve into something more. That is the reason for your close follow care.  I happily see my BS and my onc at 6 month intervals as I want to do everything possible nip any new cancer in the bud.

pattimay--everything I've ever read says that ALH and ADH are both precancerous conditions with similar risk levels (about 20 to 25%); one is not more serious than the other. When your doctor said your ADH was "severe", perhaps he is considering it to be borderline DCIS? If that's the case (and you should ask him specifically), then it would be more serious than just ALH.

Anne

I had microcalcifications in January - biopsied - ALH.  Oncologist wanted me to take tamoxifen.  I know a few people on it for bc and they HATE the side effects.  Having had several previous biopsies and scares, along with family history (40% risk of getting bc, several family member have had it - mother, aunt, grandmother and cousin), I am having skin sparing masectomies tomorrow - just want to get rid of it all before it becomes cancer.  Surgeon agrees with my decision because I am a worrier.  This way I won't have the side effects of tamoxifen - I am 49.

I had Atypical Ductal Hyperplasia twice. Both times I had surgery and no follow up, no medication. So now I have IDC. There is a good chance that it could have been avoided by going on Tamoxifen. It wasn]t offered. There was no follow up of any kind. Ask for it. Don't just let it go as I did.