ALH, Lumpectomy, Tamoxifen Whirlwind!!

Besides ALH, I also have classic LCIS (which some authors now group with ALH on a continuum, calling the group lobular neoplasia.) 

Almost everything about LCIS is controversial. Since LCIS is now often grouped with ALH (LCIS is more advanced than ALH, and usually considered higher risk.) and I'd estimate the same is true for ALH women too.

The state of breast cancer prediction is in its infancy, at least for individuals (answering the question 'What is my risk for breast cancer?')  Even if you didn't have ALH, this paper opines that our breast cancer risk models for individuals are really quite bad.

"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."

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

Since we have much, much less information on people with ALH than we do about the general population, you can imagine how much we know about the risk of people with higher risk lesions.

Even if you assume your breast cancer risk is that of the population that has your risk factors, this paper opined that

We conclude that, for women < or =35 years, a significant FHBC may
be a stronger predictor for breast cancer development than high-risk
lesions.

http://www.ncbi.nlm.nih.gov/pubmed/18979140

Your program sounds like what the NCCN recommends for LCIS, and what I do.  

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

Now, after  almost 10 years, my oncologist now wants me to have the twice-a-year breast exams by my general practitioner and gynecologist, along with yearly mammograms.

One year after my LCIS diagnosis, I had 2 more biopsies, both benign.  I had 5 years of tamoxifen starting about 6 months after my LCIS diagnosis.  Besides those 2 biopses, I have had no other breast issues.

You are very welcome, MileHighStew.  It sounds like you have a solid treatment plan in place, and are dealing with this much better than I did!  Long term studies (like this one for LCIS) found

The cumulative risk of developing IBC continued
to increase 15 to 25 years after LCIS diagnosis. http://jco.ascopubs.org/content/23/24/5534.long#T2

The numbers are extremely small in this 25 years after LCIS diagnosis group, but this is probably why they recommend continued screenings. Still, this study is perhaps the largest and longest for LCIS women.

Best wishes to you!

They found my LCIS and ALH at (essentially)  the same time.

10-05: I had my normal annual mammogram, and they said I had 'suspicious calcifications'. 

11-05: They tried to see it on ultrasound, but couldn't find it.  They didn't know whether or not it was worth trying to get a stereotactic mammogram-guided biopsy, but they did.  

12-05: So from this stereotactic, mammogram-guided core biopsy, they found my LCIS.(My radiologist called me.)  I never got the pathology report from this core biopsy, but I was referred for surgical excision. 

1-06:  The surgical excision also found LCIS with features of ALH. 

2-07: I had 2  subsequent biopsies - one driven by ultrasound results, one driven by mammogram results.

~7-07: I had all 3 samples sent for review at a local major medical center pathology department. They thought my surgical excision was LCIS with ALH.  I had this done because I wanted to find out what my risk for invasive breast cancer was.  When they told me 'its somewhere between 10% and 60% but probably closer to 10% than 60%.  If you want more accurate information than that you'll have to go to the literature.' That's a pretty big range.  I was angry with this answer because I knew the 'average' woman in the USA has something like a 13% lifetime risk of breast cancer, and from everything I read, LCIS (or ALH) gave a higher risk than the 'average woman'. When I talked to my PCP the next year, he wasn't at all surprised they didn't really know my risk.  I delved into the literature and found the 'coin toss' article.  I knew then they don't know beans about answering the question 'What is my risk for breast cancer?"  I would have liked to know how weak was the prediction about my breast cancer risk earlier.

Some people say they got 'XX.X%' risk from the NCI breast risk calculator, down to 3 decimal places. http://www.cancer.gov/bcrisktool/

From the 'coin toss' article, you can see that they know quite well how many women in a group with the same characteristics will get breast cancer; they don't know beans about which particular women those will be.  The risk calculator 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

but they don't hint about the magnitude of that unknown.  From that 'coin toss' article, about 40% of the women who got breast cancer will have a modified Gail model score lower than that of a woman who did NOT get breast cancer.

Interesting Linzer. When I had a diagnosis of ADH which is a precursor to IDC, and ALH which is a precursor to ILC my BS said he was only concerned about the ALH mainly because it can be a marker for BC in both breasts. Some was removed in my initial surgery, and more was found in the final path. along with the IDC. I wonder if they can do hormone testing on your ALH? And if positive would they recommend tamoxifen? While I don't think that finding deserves much worry right now, I would follow up. Please let us know what your doctor says. 

Linzer, I had a history of both ALH and ADH, prior to a diagnosis of DCIS.  When I asked my surgeon last year about the ALH diagnosis as a risk factor, she stated that the DCIS diagnosis trumps that, so I imagine that IDC would also.  With the IDC diagnosis, you are already at increased risk for occurrence in the other breast, and with the ER/PR neg. for the IDC diagnosis, I can't imagine that they would prescribe Tamoxifen for you, just because you also had a finding of ALH.  I know we aren't supposed to quote studies without specific references on this website, but you might research increased risk in the occurrence of triple negative bc following use of Tamoxifen, which is something that I had read.

Just received a response via email from my surgeon who's on vacation (love her!!!). She said that ALH would put me in the "greater risk for BC" category if not dx'd already. Since already dx'd  the IDC trumps as Ballet said. Phew. One less thing to worry about for now Thanks everyone!