Need 2nd biopsy - questions

OllieBean

A bit of back story. I had a regular screening mammo on 3/29. Two days later (on a Saturday) I was called and told told I needed to come back for a diagnostic mammo and possible sonogram on my left breast. We scheduled it for 4/12. I went Monday to get my report and they found a subcentimeter focal asymmetry in my left breast and no mass or microcalcifications were seen.

They did the mammo and then sent me to sonogram on 4/12. It took the technician over 30 minutes to find what she kept saying the radiologist was looking for. It was at the 12:00 and was only 7mm. She said she was looking for a cyst or lymph node which both are benign findings. I wasn't concerned after that until she left and the radiologist came in with her. The radiologist then found the site and said that she felt it was suspicious but also felt it could be benign but wanted to biopsy to be sure. However, when she wrote the report she said it was BIRADS 4b. My primary who I saw on the 13th wanted me to see a breast surgeon. I saw him on 4/16 and a core needle biopsy was performed on 4/24. Again, it took a while to find it and the radiologist even said that he feels they found something just to please me in the first sonogram. That upset me extremely. He did apologize for saying that but the words were out of his mouth already. He did find the area and said that it would be hard to biopsy because it was so small. He wanted me to wait 6 months and do a biopsy then IF something even showed up on the mammo at that time - I asked that he do the biopsy.

I got the results today on 5/1 - atypical lobular hyperplasia

My breast surgeon explained to me it was a benign finding! I was so relived to hear those words benign. Then he kept talking and said that he didn't feel that the radiologist biopsied the correct place according to his report which concerned him for 2 reasons. I got an ALH on an area that wasn't the area that needed the biopsy and that means another area still needs a biopsy. How was the wrong area biopsied when it was in 12:00 position? I was confused then and he says it happens with small areas. That really didn't answer my question after a completely different area was found and a biopsy done. See, comfused.

I asked if that means the other area is benign and he said we need another biopsy but this time he wants an MRI guided biopsy. The report the radiologist sent said the lesion was at 2:00. That nothing was found at the 12:00 on sonogram for the biopsy. How common is it to biopsy the wrong place and still get a benign finding but still a finding?

My surgeon sent me to do another mammo (same building) with compressions today and he was there when it was being done. He came back in and said the lesion is still there and it needs a biopsy. Again he said he wants an MRI guided biopsy done.This time a different radiologist rated it as a BIRADS 4c and at the same time they found nothing showing where my marker was placed at the 2:00. Shouldn't there be something if it had a biopsy with an ALH finding? Is it hiding?

I was also sent for genetic testing today and that should be back in two weeks, I was told

I really like my breast surgeon and he was really on top of it and he tried to explain everything where I could understand it but I'm so confused. How can I have ALH on an area that doesn't even show anything on a mammo?

I am 46 years old with no history of breast cancer. However, I was diagnosed with Uterine cancer when I was 25 years old and had a complete hysterectomy. It's very rare for a 25 year old to have that type of cancer. They removed 1 ovary and 1/2 of the other for hormonal reasons left 1/2. I wish they'd taken it as I eventually developed hyperplasia in that ovary at 29 and had it removed.

My breast surgeon said that if the other area come back the same he wants to put me on chemopreventatives. He said there are 2 kinds that he would consider but didn't go into detail. I have no idea what they are or remember what he called them. I just remember one starts with a T and the other an R. I don't google as I'm scared enough. A really close realive to my husband has stage 2 IDC and recommend this site. She doesn't post but reads a lot. (Hi Mish). She's as confused as I am and can't answer my questions but I sure hope someone can give me some insight.

The surgeon also said he wants to wait on my genetic testing to come back. He said that's it possible both areas will need to be removed and waiting for insurance approval for the MRI biopsy will take a few days or more and getting pathology back that testing should be back. Why wait for genetic testing if something needs to come out? Is he considering removing my breast if I'm BRCA 1, 2 or both positive? I asked but he said he didn't want to add to my anxiety needlessly because it's not a bridge we've come to yet.

I'm waiting to be scheduled for the second biopsy and needless to say I went from being pretty calm to scared out of my mind. I'm still hoping for another ALH or something else benign and will keep saying it's nothing. Thank goodness for anxiety medication.