Atypical Lobular Hyperplasia FOR DUMMIES! HELP

shabby6485

Hi guys. Short recap.. had vaccum biopsy for calcs... then had two excisional lumpectomies. Was told it was b9 but my path report read MICRO focus of ALH. 

Have to go for first 6 mos follow up mammo this month.  My anxiety is starting to spike.  Do they remove the ALH with the excisional biopsy?  Can calc's return within  6 months? What exactly are they looking for? Changes? What to expect? 

I guess more knowledge may reduce my anxiety. I am on anti-anxiety meds and they are not even working now.  

The idea of going every 6 mos is torture to me.  I feel like I am waiting for the other shoe to drop. Any help would be so appreciated. God, I hate boobs. 

leaf

Do they remove the ALH with the excisional biopsy? 

They may remove some.  The purpose of the excisional is to look in the area to make sure there isn't anything worse in the area.  (Studies differ.  With LCIS, which more advanced than ALH, in roughly 10-30% of the time you can get something worse seen on excision.  There are a lot of variables in this number, including the imaging, equipment, skill of the radiologist, etc. besides the random variation between patients.) Usually, ALH is not detectable on clinical exam, mammogram, or ultrasound, so usually they can't remove all the ALH because they don't haveany way of seeing it with the naked eye.  In any case, it doesn't matter because ALH does put both breasts at somewhat higher risk of cancer, even if other breast places or the other breast doesn't have any ALH in it.

Can calc's return within  6 months?  Yes.  The calcifications are not necessarily caused by the ALH.  Most calcifications, even 'suspicious calcifications' are benign.  It is not unusual for calcifications occur not at the spot of the ALH, but nearby.   Its a weird condition. 

What exactly are they looking for? Changes? Yes, in the excision and in the mammogram.  One feature they will be looking for in your excision is an pulling or difference in the tissue, since they normally cannot see ALH with the naked eye. They will look for any changes in your mammogram. You will probably form some scar tissue from the excision, so they have to decide if any changes are due to scar tissue.

What to expect?Closer monitoring.  Different institutions differ, but I think the usual minimum will be biannual clinical exams (instead of the normal yearly) and yearly mammography. Tamoxifin may be offered.

To get some idea about your risk of breast cancer, you may want to check out http://www.cancer.gov/bcrisktool/  It may be lower than you think.

Due to complex statistical stuff, this gives you an idea about the risk of breast cancer of people who are probably like you. It gives you an idea of the breast cancer risk of the group of people who have many of your risk factors.  But it gives you a poor idea of your individual risk.

shabby6485

Thanks, Leaf

So, if calcs are "b9" and ALH is not cancer...what are they looking for? To see if cancer formed in 6 months because ALH rises your  risk?   If they see more calcs, will they do another biopsy? Gosh, I hope not. I'd hate to go thru that agony again.  Well, I guess it is what it is.... I really appreciate you writing back to me.  I always feel more in control if I know what might come next.

Shabby 

leaf

I think the server is having problems.

In the excision, they are looking for changes in the tissue they can see with the naked eye.  They wll also take out tissue in the area of the ALH.  That's because maybe 10-30%?? of the time they will find something worse in the area - worse meaning LCIS, DCIS, ADH, or invasive cancer.  Microcalcifications are the most common symptom of DCIS.

For your 6 month mammogram, they are looking for changes. It can be difficult because you had an excision, which causes changes and scar tissue.

If they find changes, if they are suspicious, they will order another biopsy. **IF** they find something worse on this future biopsy, it may have originated with the ALH, or it may be something they missed on the excision (I think the chance of this is small), or it may be just a random thing. About 70% of women with breast cancer do not have any obvious risks for getting breast cancer (besides being a woman.)  We don't know what it is about ALH that puts your breasts at higher risk.