How important is taking hormone blockers after surgery for IDC?

Hi @themagster,

All I can do is share my experience. After my second bout with breast cancer in 2005, I refused to take a hormone blocker after weeks of chemo followed by weeks of radiation.

My BC returned in 2020, and I had a second mastectomy done. Because the margins and the sentinel node were both clear, I opted once again not to take a hormone blocker.

This past September, not even two years after my last mastectomy in 2020, I was diagnosed with metastatic breast cancer with mets to my skull, ribs, spine and pelvis after I fell and broke my lumbar spine (L3.)

I am now stage 4. I often wonder if this would have happened if I had agreed to take the hormone blocker.

I just don’t know. Unfortunately, I will never know.

I am 68.

I did not take those drugs and I too hsd micro in sentinal node. Now. cancer spread to nodes in armpit..six years later. but I didn't do radiation either. so you did rsds...that may prevent recurrence.

In 2016 I had Idc and couldn't tolerate hormone blocks ..never took them after trying three of them.Q quality of life was most important. Now it has spread to armpit nodes! But really, I had six years pain free. Now I face radiation and shot of faslodex, fulvestrant? onve a month.

I'm 81. My lumpectomy, chemo and radiation stopped over a year ago. I was HER2+ and he tumor was 2mm with a lymph node involvement.
At my latest check up I mentioned to the radiologist that my hip was hurting; I figured it was arthritis. I don't want to take AL's because I was so miserable during menopause I don't want to feel like that again. I was taking hormone treatment right up to the time I was diagnosed with cancer so that was probably what caused my cancer as I have no one in my family that has had any kind of cancer.
Three MRI's later and a PET scan last week, the radiologist said I had no sign of cancer and I appear to have some arthritis.
I'd rather starve myself for PET scans and lay on that table for 30 minutes than take those AL's. I'm gambling.

Good morning janis. I was browsing the discussions and found this one. I am slightly biased here. I was diagnosed stage 4 IDC in 2019 "de novo" (never early stage diagnosis or treatment). Right from the get-go, those of us who are Estrogen+ are put on an AI's. You are correct in that if one AI does not work or has side-effects that are too harsh there are others you can try. Most of them do cause joint pain to some extent, but in my case that pain subsided after several months on letrozole. As an early-stager it may seem that everyone wants to just get past the cancer and get on with life, no more meds or their effects. I see gals everyday join our metastatic online group who are recurrences. I think it's worth it to give the AI's a chance if it reduces your risk of getting where I am today. Exercise absolutely helps and that may be why you feel better than some others might. BTW, I never had fatigue from my AI. If I had one wish it would be that no recurrences happen but I see it everyday with many never having any predisposition or genetic links to breast cancer at all. I wish you the best.
Peggie

Im so sorry about your recurrance. Where were you treated? I think each case has to be considered individually. No one has all of the answers. Docs give your their best educated guess. Lots of numbers/statistics, but no one knows definitely.
I prays alot and that gives me hope😘

My experience is local recurrence 2.5 yrs after stage 1 IDC, lumpectomy, no nodes, clean margins and undergoing 15 sessions of radiation, opted not to start AI. I was told at the time that the rad was the most important treatment, 95% protection, with AI adding maybe 3%.
So I am one of the rarer return cases.
Now with local recurrence and mastectomy, am still dragging my feet for the AI, but am starting it with trepidation and gradually.

Hello friends,
I’m an active healthy 73 year old with early Osteopenia. Since this discussion pertains to the inhibitors, I’m chiming in. I had IDC stage 1, no lymph nodes and clean margins post surgery done in Az at Mayo. I stressed and worried for weeks about treatment options, meeting with my Oncologist and Radio Oncologist several times before deciding to opt for a 5 day treatment of radiation and declining the AI treatment. In my case, I felt that the benefit from radiation outweighed the possible benefit with side effects of systemic pill treatment over the 5 yr. route. (Just too many looming negative possibilities with AI). I made the best decision I could considering both doc’s advice, research, family and prayer all considered. Those weeks of stress from August through November were hard. But my prayers and family encouragement made my journey easier. Best and blessings. 😘🙏🏼

This is the same for me, and I have taken similar decision as you, go well. xx

Is bone loss, joint pain & fatigue a for sure result of your medication? I did a bone density test before I started Tamoxifen. I have been on the medication 3 months and I feel fine, still work out for an hour or longer 4-6 days a week. I ride my bike and walk daily. I try to eat well to keep my body strong and feeling good. I take the medication because I was told it reduces my chance of recurrence. Also, if I experience side effects I believe I have the option of switching brands as I've read that the "fillers" in drugs can cause various side effects. Wishing you peace in your decision.