Please share your experience with ALH

Petitegal127

I recently diagnosed with ALH.  Getting the atypical area surgically removed end of month.  Fingers crossed that the path results will still be atypical and nothing else.  I was told this condition can also occur in my other breast and it can also come back again in same breast.  I am concerned since it does raise your risk of getting breast cancer.  I have no family history at all, but I am finding that means nothing.  I worry that this area was biopsied 7 months ago and the cells were normal then and just diagnosed me with the benign condition of sclerosing adenosis.  Since that area changed in less than a year has me very concerned.  I was told that once the area of ALH is removed and path results are good, then go back to once a year mammo & ultrasounds.  Is that the protocol you follow?  Do any of you take Tamoxifen for this condition.  I was told only if there were cancer cells should we down that route.  

Just wondering everyone's experience with ALH.  

Petitegal127

No one??  Is atypical lobular hyperplasia rare?

alicki

Hello,

Sorry, it's one thing I don't have. But am taking this opportunity to send you positive vibes for your surgery :-)

Alicki

farmerlucy

Hi Petitegal - There are quite a few threads on here about ALH. If you go to the search feature you can probably find them. It seems in general most women choose watchful waiting with alternating screening between MRIs and Mammos. Some choose a PBM. After my diagnosis my BS sent me to a genetic counselor to get an idea of my risk. You can read my story in my bio. I'd be happy to help you in anyway I can.

eileenj

Hi Petitegal! I too am dx'd with ALH and LCIS and have not yet been to a genetic counselor but I can tell you that I am seeing an oncologist.  I have been on the 6 month watch alternating MRIs and Mammo/Ultrasounds and surprising, after this last Mammo/Ultrasound, my oncologist recommended another Mammo/Ultrasound in six months.  I know that the protocol is alternating MRIs and Mammo/Ultrasounds so I am also concerned as to why my oncologist does not want me to repeat the MRI next.  Her explanation was to see if my "cysts" settle down.  This scares me as MRIs pick up stuff that Mammo/Ultrasounds do not.  However, MRI's do find alot of false positives which mostly result in biopsies and then excisions.  So I am going to find another oncologist and get a second opinion.  Also going to speak to my breast surgeon and see what you thinks.

Hope you are doing well and I am sending you much love and light as we can use all the strength we can muster up.

Eileen xoxoxo 

Petitegal127

Thanks ladies. Alicki, thanks for the positive vibes.  farmerlucy,   I will check out other threads. eileennj,  I know if my condition persisted she mentioned MRI too, but she said that can be a slippery slope because that shows every little thing.  Good luck to you gals as well.