How important is taking hormone blockers after surgery for IDC?

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.

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.

My situation is similar to several who have posted. In September 2022 diagnosed with Stage IDC, 3 mm size, lumpectomy, no nodes involved, clear margins, no genetic clues ( but daughter died of triple negative 10 years ago) 🙁 :(. My husband also had breast cancer 6 years ago, mastectomy then tamoxifen until this year when a potential blood clot appeared in one leg. So no treatment now, doing well! But he is not a blood relative.
Radiation oncologist and oncologist both said my survival rate would be same with or without radiation so chose no radiation at this time. Oncotype test was not recommended as tumor too small. However I am going to request it as if score is high, I probably would get radiation.
Since lumpectomy I am taking Arimidex, an AI, with no significant side effects now. However, had recent bone density test that showed my osteopenia was on fast track to osteoporosis. So also now taking Fosamax. Arthritis seems worse but could be from the colder weather.
Also dealing with a failed total knee replacement:(. So chronic 24/7 knee pain from that. No one knows why but have read about 20-30% of these surgeries end up like this. Used to be very active but now not so much. Walking is good for the bones but too painful to do much. Swimming is tolerable and once a week bike ride is all I can handle.
Blessings to all who are dealing with this too common of a disease!

It is hard to comment on some posts without knowing Oncotype and ER score and grade etc.

I just want to say, as I have written in the past, that I took letrozole for 5 years and didn't have any big problems with it. The friends I have who took AI's also did fine.

I had a Breast Cancer Index test done after 5 years, which told me there was no benefit from extended AI therapy but I would have done 7 years.

I miss the feeling of safety that I had. It is therefore hard for me to understand not trying them. I do understand some people have problems on them after trying. (I had osteoporosis before starting AI's and am on Tymlos now.)

Side effects do ease for many, over time.

I started with generic anastrazole and switched to generic letrozole and reacted to fillers, so I took brand name Femara.

I am so sorry. They really don't know what bc is..or cancer period!!! You would not know you had cancer again if you hadn't fallen. Did Dr's say your second bout in 2020 wss stage four? I don't know if I'm in stage four now since it's in my lymph nodes...after oncologist telling me in 2021 I was in remission or ned. This second one started with a single enlarged lymph node up high in armpit

he hormone blocker would have caused you to possibly end up with joint replacement.. much sooner and your quality of life would be compromised... so you did what was best at the time. And many treatments for stage four.. I may be there too.

I have read that it especially prudent to take AI's for at least two years after ER+ breast surgery, during which time the BC patient may be changing her lifestyle to include more exercise and a healthier diet. The reasoning is that it takes the body some time to adjust to the body's new biochemical environment gained from lifestyle change. The whole point is to strive to prevent recurrence and metastasis. My breast surgeon said, "Try taking it for at least two years." This echoed what I read: https://qr.ae/pr8dRC I have been taking a hormone blocker for 18 months, first tamoxifen and then anastrozole. My SEs are minimized with walking and exercise, coupled with a diet low in sugar and high in fruits, nuts, and vegetables, plus calcium supplementation. I will re-evaluate taking this medication at my 2-year mark. which coincides with my next dexascan. Good thoughts to all and the decisions we make individually confronting BC.

Hi @cctoo —

After my second mastectomy in 2020, my margins and sentinel node were both clear of cancer cells. I definitely wasn’t stage 4. I figure I was stage 1, if that. Once I had my margins and a node were clean, I just didn’t care. I thought I was safe.

In retrospect, I wish I had given Arimidex a chance. However, I had truly horrible hot flashes after chemo in 2005, and I didn’t want to go through that again! By 18 months later, the cancer had metastasized.

I do tend to believe it was fate — or serendipity, as my Mom would have said — that I fell when I did. I had to have kyphoplasty, and a sample that was taken at that time confirmed cancer caused my spinal fracture moreso than the fall I took.

And you know what? I haven’t had a single hot flash in the three months since I started letrozole!

I'm 57 and had a lumpectomy for a 2.1 cm malignant tumor. The lymph nodes were clean but because it just crossed into the stage 2 sizewise (by 1 mm), I was recommended radiation and Letrozole AI. I did the radiation (which was 33 sessions of a milder dose) with no big problems. But as far as the daily dose of AI for the next 5 years, I had the same concerns as yourself. Since the risk of return is present, but on a smaller scale, I decided to wait until after completing radiation and giving myself a 4 week rest to recover. I have begun letrozole every alternate day just to see how it goes. If I have problems, I will discontinue.
I am also on a natural therapy called Iscador, which is a plant based injection twice a week, to boost the immune system to fight against cancer cells, so do what is best for you. There is not a one size fits all, but you are given general recommendations which you then need to think through for yourself.
It's true that it reduces the risk of return, it's also true that it has a lot of side effects. Maybe not everybody experiences side effects. God Bless you and wish you good health.

I recently read an article about how cancer doctors should not tell us "we got it all." While this comment may be accurate concerning the surgery itself, it gives patients a misleading feeling of security. With cancer, it is a lot more complicated than removing all the tumor or even both breasts. Stray cells, if they are they type that can implant and replicate, may have escaped regardless.

I don't mean to repeat myself but it seems like a good idea to at least try an AI. And give side effects a chance to settle down if you can. I did have hot flashes but only for a month or two.

Another thread here on this forum showed effectiveness for lesser doses but the side effects were the same! Probably because estrogen suppression is the culprit and any dose that is effective will be suppressing estrogen.