Just diagnosed and now waiting

mvspaulding

Hi,

I have been a member of this forum for years because I had an ADH DX (atypical cells) about 5 years ago. I was hoping I would never have to post on the Just Diagnosed topic, but here I am. I was diagnosed on 9/21 so all of this is brand new to me and scary. All I know right now is my tumor is 1.1 cm, invasive ductal carcinoma. Saying stage 1 now because we won't know lymph node involvement until surgery. Grade 2 tumor, ER+ PR-. Her2 test was inconclusive,and had to do additional testing for that, so I am still waiting on that. Also, had genetic testing sent off and waiting on those results. All of this waiting is kind of nerve wracking. I also had an MRI on Thursday last week and haven't gotten those results yet. Breast surgeon says best case is I have a lumpectomy and followed by radiation. Worst case mastectomy and chemo. I don't know though, I am kind of leaning towards mastectomy even if I don't have any lymph nodes involved. I have been on this regimen of every 6 month checks ever since the ADH diagnosis and I feel like that worry will just continue if I have a lumpectomy. Also, I have been reading and I am not clear about the ER+PR-. It seems most of the breast cancers are ER+Pr+ with only 13% being ER+Pr-. Can anyone shed any light on whether that means mine is a bit more aggressive? That is what I have been reading.

Skittlegirl

Sorry about your recent diagnosis. My understanding is ER/PR are just receptors on the cell that can be targeted. Her2 is the one that indicates aggressiveness, but being positive for Her2 still allows for some targeted therapy.

Dancermom1999

Hello and sorry for your diagnosis. I too am er+ and pr-. I am also her2 -. While it is preferable to be pr+ too, er+ is good and is treated the same as if er+/pr+. They are still not sure of the significance of the pr. Some say it is more aggressive to be pr - but that is not the case with my tumor. I was er+ at 82%, my grade is 1. My mitosis was only 1 and my KI 67 was 16%. My tumor was small 2.6 mm with another 2.4cm of DCIS. The concern with pr- is that it might not respond as well to tamoxifen however, studies show it does better with an aromatase inhibitor ( AI). I started on tamoxifen for a year but had complications with my uterus so had a hysterectomy and am not on an AI and doing well. I dd not have to have chemo. Wishing you the best. Kathy

mvspaulding

Thanks ladies, for your responses. I guess I will feel better once I see the whole picture. I know they do all this testing to ensure that you get the best personalized care but waiting is torture. Now that I know it is there, I just want it to get out. I had the option of taking Tamoxifen 5 years ago as a preventative and I chose not to because of other problems I have and the side effects. Now I am wondering if I could have avoided all this if I had. I am sure I will have to end up having a hysterectomy after all this too, because I already have had to have one ovary removed from a cyst and endometriosis. It's just all very depressing to think of right now.

mvspaulding

Well, I found out my Her2 was negative so that is good and my MRI didn't show any more suspicious spots. Now I am faced with the decision of what surgery to have. Lumpectomy vs Mastectomy. I know that the lumpectomy with radiation will be much easier on me. The only thing that makes me nervous and keeps me thinking about the mastectomy is that my cancer was found in my left breast. The biopsy that I had come back with ADH (atypical ductal hyperplasia) five years ago was in my right breast. So what worries me is what if I go through all this in my left breast with a lumpectomy and I end up having a recurrence in the right? I am kind of driving myself crazy thinking about this. I haven't gotten my genetic testing back yet, so if that is positive I will have the decision made for me, but I am not really expecting it to come back positive. Can any of you share what went into your decision in receiving the treatment/surgery you elected? They are testing my lymph nodes during surgery so right now I am considered Stage 1 cancer.