Nov 10, 2022 07:02PM abigailj wrote:

62 at diagnosis, IDC in one breast and ILC in the other…had BMX with immediate DIEP recon June 2020. Oncotype 6 on IDC side and 11 on ILC side. ER+/PR+ HER2- No chemo, no rads. 3 months anastrazole prior to my surgery which was delayed due to COVID. MO said 3% risk with the pills and 6% without. Made decision not to take them after surgery. I guess time will tell.

Nov 26, 2022 02:29AM oldladyblue wrote:

Hi Inthesage2, would you mind posting your status concisely and coming back yearly to share your check up results? I wanted a "small post" thread of "statistics" from women who didn't mind sharing future status to keep things "scrollable" as the thread hopefully grew. In my own case, even when pressed, my doctors couldn't give me their exact prediction statistics, just that I "had" to take AIs to be safe. I'm going to PM you if that's OK.

Nov 29, 2022 09:40PM inthesage2 wrote:

I just talked with one of my oncologists, the one who specializes in breast cancer. Since I cannot take tamoxifen and do not want to take AIs (and had an ocotype of 33) he recommended I do Faslodex or I could do Evista. I have to speak with my primary oncologist about this since Faslodex is a monthly injectable and usually given to women with metastatic breast cancer. It's all frightening really in terms of side effects. I see an ND oncologist next week for another opinion.

Dec 18, 2022 12:49AM - edited Jan 9, 2023 03:12PM by gigil

One thought I have, as I decided not to take an AI after my initial diagnosis 12 years ago - I was diagnosed stage IV mets to the bone two years ago. I was then forced to take an AI. I have taken Letrozole for two years with minimal side effects. It has recently stopped working and I am now taking Faslodex shots and Ibrance. So far side effects have not been bad. They are certainly less than symptoms of bone metsthroughout my body. My oncotype is 30. I now wonder if had I taken the AI 12 years ago, would I have mets today? My lymph nodes were clear at the time of my lumpectomy.

Dec 18, 2022 05:07PM gailmary wrote:

hi Gigil. Your story is a bit like mine. At 52 dx with IDC with tiny micromets in 2 nodes not requiring chemo. After Radiation was Tamoxifen but depression and leg cramps after 9 months I switched to letrazole. 3 yrs later I stopped it due to fibromyalgia type pain.

Oops. Fast forward to 60 yrs old and my arm was nearly paralyzed with pain from a bone met. Radiation followed with drugs, drugs, drugs and drugs. Ibrance, xgeva and letrezole again with faslodex. All at same time! Pretty tolerable. Onc only wanted me on ibrance 1 yr. Then after 2 yrs I wanted to drop letrezole thinking it was causing insomnia but no pains. Then jaw pain put a halt to xgeva. Still on faslodex with the same 1 stable bone met. 6 yrs now.

What I realized tho is that it's not so much a side effect of the meds leading to side effects. It's actually a lack of estrogen the desired effect. I'm highly ER+. That is what will stop the cancer.

No estrogen is a bit the same as when you approach menopause. Look up perimenopause if your not there yet. It can be nasty. I was told they can treat most any side effect but it's necessary. I suppose i have a new normal taking a few more drugs than I'd like but I feel pretty good. For aches and pains now I would take tumeric/Curamin.

I don't kid myself. If t took the letrezole that 1 extra year, it still would have returned and my chances were like a score of 12.

Gailmary