atypical lobular hyperplasia-tamoxifen

I read the posts and just wanted to make a comment of my situation.

I was diagnosed with atypical hyperplasia on both breasts five years ago. Doc decided to take out the ones on my right breast to test them. After they were examined and described as atypical hyperplasia doc told me not to take out the ones on the left breast cause they were not cancerous. I was never told that it could be a precancerous situation or that I had to take a closer look on my left breasts remains! After 3 years I was diagnosed with metastatic(bones) cancer from my left breast! If only I knew that I was in great danger I would had a closer look on the spots and not be sleeping awake....

The only think I know is that everyone diagnosed with atypical hyperplasia should take a closer look with an expert oncologist...Have a nice day and TAKE CARE

Anne1962-ALH does not necessarily mean you will have cancer it the future, but it is an increased risk factor. You are being monitored so you have time to research and think about options. There is no rush for surgery, that may not be warranted at this point.  I copied the below from Dr. Susan Love's website.

High Risk / Assessing Risk ATYPICAL HYPERPLASIA

Women who have been diagnosed with atypical hyperplasia are at higher than average risk for developing breast cancer.

Approximately one in five women who have a mammogram over the next 10 years will require a biopsy to further investigate a suspicious area. About 4 percent of these women will be found to have an increased number of highly abnormal-looking cells, a condition called atypical hyperplasia. These women have an increased risk of developing breast cancer. The breast cancer may develop in either breast, not just the one that was biopsied. How much greater is the risk of developing breast cancer for a woman who has had atypical hyperplasia? Think of it this way: In a group of 100 women, 5 would be expected to go on to develop breast cancer. In contrast, in a group of 100 women with atypical hyperplasia, 19 would be expected to go on to develop breast cancer.

Leah-  My Dr. uses the NCI guidelines and in their pamphlet in the office they printed risk factors for cancer, and ALH was on the list. Like I said ALH does not necessarily mean you will get cancer. A lot of people have abnormal cells and never go on to develop anything. I do think it's really important to watch it though. like I said I had ALH and that's ALL that showed up on my MRI. After surgery though they discovered my breast full of LCIS and DCIS, both did not show up on MRI, both are cancers in situ. My case however is much worse because I already had cancer on the other side. What concerns me was how I was told that I could keep the breast with ALH.  One Dr I saw even said, " I think it's nothing and I wouldn't do anything on that side" He also recommended a lumpectomy on the side with IDC which also turned out to have cancer and LCIS and DCIS. All I could think of is there was a lot of stuff in there that didn't show up.

I agree the uncertainty is the hard part. I'm not trying to scare anyone. You have to educate yourself and be your own advocate and make choices that you can live with. It's all very personal, but education and screening and considering your own risk factors are very important.

Anne1962-awww, thank you hon! I appreciate it too. I learned sooo much on BC.org.. Although your medical team is your first and foremost source for your medical issues you can learn so much from talking to the women here. It's a whole different perspective because we are all in this together and want to help each other. With the women in on here you can ask any questions and go into the minutest details and everyone is patient. You don't always get that in a Dr's office.  I can't tell you how many topics I have researched and continue too. I always think knowledge is power and understanding helps you make the right choices for yourself.

Anne1962 - I think it depends on your risk.  When I was diagnoised with ALH, because there was a strong history of breast cancer in my family I went to genetic counseling and they figured my risk of getting breast cancer (figuring in the ALH) was 40%.  I chose PBM - a little drastic maybe, but I was tired of all the biopsies and scares.  Plus the oncologist wanted me to take Tamoxifen for 5 years, said the ALH is considered pre-cancerous and the Tamoxifen would stop cells from changing to cancer.  I didn't want the side effects of Tamoxifen - so PBM was the best choice for me.  Talk to your doctors - all of them - my surgeon was totally in favor of the masectomies - if I was ready for it.  Keep us posted.