Ked1019

Shabby, I feel for you. I have my follow up MRI on 10/14 and then my mam/us on 10/22. I am really nervous about this too. I don't like having ALH diagnosis and being told it was in the margins but they don't re-excise for it. I feel like this whole year has been wait and see. It took four months from initial mam showing calcifications to surgical excision giving me diag of ALH. I also had other biopsy prior showing FEA and other atypical stuff. I can't remember what they called it. So here we go again. Hang in there and enjoy your "big event" and then go in for your testing. Smiles...

Shabby, I was going through all this at the same time you were back in April/May. My process took about 3 months from initial stereo bx to wire excision. I started with micro calcs which like Misty came back as Flat epithelial atypia (very similar to ADH). My final wide excision/lumpectomy diagnosis was a buffet of terms... FEA, CCLA, ALH widespread over my tissue samples. I also have several dialated ducts but so far nothing is showing in them. I have had periodic bloody discharge on that side too. I am telling you all this because like you I am up for f/u tests in October. I have a MRI, mamm, u/s all scheduled. I am also seeing a specialist to discuss my risks. ALH is tricky and sneaky and from what I have read very scary. It doesn't like pictures so it hides. If and when it becomes invasive (ILC) it may not come in the form of a lump but more like thickening or what some describe as a pencil shape lump running along the ducts from lobules.

 I am with you and will be thinking of you. Lets be positive that nothing will show on our new films. Keep me posted. Smiles/hugs

Stephanie, I do remember you. I don't understand how you can be having discharge if there are no ducts there. I remember when I had my consult and was considering doing the major duct excision surgery I asked about further discharge. I think he told me that basically all the "holes" would be cauterized shut. I am not sure if I am making sense here. with the ducts gone there was nothing leading to the openings in then nipple. He said this is the reason the nipple would become inverted.. no support system there. Maybe I am totally incorrect. Regardless, I would call and at least talk with the nurse and find out if there is a need for you to return to the surgeon.

 I hope you are doing well. Fortunately I have not had any discharge in several months. My month of tests (f/u 3 months) begins again next month... mri mam/us etc. I meet with the oncologist then as well. My surgeon told me to massage the area around the excision to loosen the scar tissue and promote softening of the area. It worked. Best of luck and keep us posted.

KED

Hi there, I too have ALH but I also have flat epithelial atypia or also known as columnar cell change with atypia. This is just shy of being an ADH diagnosis. I had a section of tissue taken and the ALH was in several blocks from the biopsy. They did not find cancer. I am on a 3 month follow up. But after that I am not sure if it will move to 6 months. Please come back and let us know your outcome. I hope you get boring results next week, but if not then know you have a "family" here that will help you through it. These ladies have been awesome.

Karen

HI, I had u/s in October and then one in March. March showed tiny tight cluster of microcalcs.. had stereotactic biopsy which showed Flat Epithelial Atypia .. then had wide excision on that area and it came out with ALH (atypical lobular hyperplasia) throughout the samples taken. I am under close watch. Good luck to you.

 KED

1. Leaf, I love your line "I couldn't do anything I enjoyed, but I was able to do the things I hated". When I was waiting to get my biopsy and then waiting for the results I cleaned out closets, did laundry and then after the biopsy I couldn't do much lifting so I sorted papers in my office. All the things I hate doing got done in that short period time.  :)

I am sorry you are going "crazy" right now. The wait is the worst. If you can go to the medical records department for the facility where you had the biopsy and obtain a copy of the path report. It is yours by law but you might have to pay a small $2.00 fee. I didn't have to pay anything for mine. You could also call the dr. office and tell them you will be coming by at 4:30 to p/u a copy of your report if they could please have it ready. I bet that will prompt a call to you. Good luck and here is to benign results.

 KED

BUMP

Jackie I have been totally blown away from the stories I have read here. My first biopsy for microcalcs found flat epithelial atypia (a new diagnosis from WHO) similar to ADH but lacking in some of the architecture (whatever) and then my next wide open excision found ALH. This was March and then June. Here we are in July and I found another little nodule/lump but in another area of the breast. My first thought was maybe I will just wait until my f/u in October when I will be having an MRI/Mam and u/s. I have been dealing with a complex ovarian cyst that is causing alot of pain and had to go through a bunch of GI testing (CT scan, other scans UGH) to rule out my gall bladder. I have a small gallstone and they are trying to tell me that my heartburn, indigestion and nauseau is from that. aparently not because my gb is normal other than the stone which like I said is small. Oh back to the breast issue... that is the reason I don't want one more doctor appointment on my list. After reading here again and finding your story I feel like I am being spoken to and told "you better get this checked out". My fingers move over it but it doesn't move. If I mess with it too much I get sore and my underwire hits it and when I bend down to shave it hurts too.

 Thank you to everyone who has posted here. God Bless all of you. How strong you all are!

KED

Thank you all for sharing your story with me. I count the months until I can get another look at these babies and make sure nothing is going on in them. October cannot come quick enough.

 Thinking of all of you... Thanks again.

KED