Is there anyone that had estrogen positive cancer, without use of AI?

Are you reluctant to try an AI or did you try one and have side effects? Many of us had few side effects (though bone loss needs to be monitored).

What do you mean by "cancer free"? Five years, ten, twenty?

Even if someone answers your question by saying yes, they remained cancer free without meds, that would not tell much about your own personal risk.

Have you had an Oncotype Dx test? That should tell you your risk of recurrence with and without meds. Everyone's score and overall profile is different.

If your case would seem to suggest AI's reduce risk, I hope you will try one!

I have exactly what you have. I tried tamoxifen and had awful side effects. I have osteoporosis so not eligible for AIs unless I take a bone protecting med also like Zometa. My Oncotype score was 14 which is considered low. If I take hormone therapy I have 4% chance of recurrence after 10 years. If I don’t take hormone therapy I have 8% chance of recurrence. I have decided to do life style changes instead of taking medication because the risk of recurrence is still pretty low. I know several women who have chosen this route also. My surgery was 9/21/2021. Radiation was completed 12/14/2021. Having breast cancer is a crap shot. There is no guarantee that one won’t have a recurrence. I pray everyday I won’t.

I have two friends who had lumpectomies, one for a Stage 0 tumor and the other for a Stage 1. Neither had chemo, radiation or anti-hotmone adjuvant therapy. They have remained cancer-free for four and six years respectively. One of them had genetic testing and a very low risk of recurrence according to the test. Time will tell if they remain recurrence-free but then people who take AIs aren't guaranteed a recurrence-free path either. Both women are over 60 and older women tend to consider the options differently according to my surgeon and oncologist.

I had a Stage 1 tumor lumpectomy last year and declined anti-hormone drugs as well for several reasons, but primarily concerns about accelerated bone density loss. However, I first had the OncotypeDX test done, which yielded a very low risk of recurrence. So that made the decision easier. And I did try anastrozole first, twice, before deciding to skip it due to side effects and the other concerns I already had. These decisions take a lot of thought and really reflect each person's inner feelings about risk, quality of life and other values that might not surface immediately.

I did a Breast Cancer Index and a Prosigna Assay test at the 5 year point of AI therapy. Both tests considered a risk of recurrence >5% to be high. Unfortunately the risk of recurrence with hormonal cancers continues to go up. (If hormone-negative cancers make it 5 years, risk tends to go down, I have read).

It is counterintuitive but the longer we go without recurrence, the higher our risk.

I had an Oncotype of 8 and risk was 6% with meds, 12% without. I also looked at pathology which didn't match the Oncotype in a lot of ways: grade 3, lymphovascular invasion, highish ki67% and borderline HER2.

I already had osteoporosis when I started Femara. I did not medicate for bones for the entire 5 years of AI therapy. (My endo did not want to do Reclast or Prolia due to some other health issues and I had not tolerated Forteo).
My bone loss the first year was similar to the drop at menopause, then it kind of stabilized for the next 4 years on meds. I ended up on Tymlos after cancer meds (and after fracture, but the fracture was due to a very wise, unusual movement.)

Breast Cancer Index said I did not need meds for years 5-10. They could not tell me whether I had actually needed them for years 1-5. I felt so safe on the meds and had few side effects. I actually wanted to continue!

@windyshores Your statement in your post “ It is counterintuitive but the longer we go without recurrence, the higher our risk.”
I do not understand. Please explain

I have almost exact story. I completely agree with you… I was on tamoxifen 5 years and in my 4 th year of an AI, nervous to go off..
No bad side effect, thank God!

I had my bilateral lumectomies at the beginning of covid, 2019. I did the radiation treatment and tried the AIs but could not tolerate them. I did them for 6 months on and off with terrible side effects, that I still have residual problems from. I stopped all and went on a healthy diet, lost 60 pounds in one year and still going strong. I have never felt better in my life, following a whole food plant based no oil starch diet. I do not believe all thhe hype about them. I am now heading to 4 years, and have never felt better. Even if it comes back, I know I am in a better place to fight it again if necessary. Follow your intuition. The drugs are pushed hard, but the results of success are low as far of benefit, in my belief. and the side effects too crippling to be of true benefit to any well being and quality of life.

From what I have read and the various testing I have done, recurrence risk continues to go up with hormonal cancers. It is not a situation where we can say phew, I made it 7 years so I must be okay. I mean, of course we put it on the back burner as much as we can. I dislike the term "cancer survivor" for that reason. Some of us haven't had stage 4 yet. Stage 4 is what you survive or don't survive. Check graphs on the Oncotype or other testing to see what I mean. The curve of recurrence goes up.

@lisajoann so you had 9 years of hormonal therapy. That's great! I think doing both tamoxifen and an AI is a great way to go- again from what I have read but cannot cite right now 🙂 Plus better for bones overall.

@jeaniebean I am sorry for your experience on an aromatase inhibitor. For other readers I just want to say that many of us find them very tolerable with few side effects, and also feel that cutting risk in half is important to us. Everyone's body- and life experiences- are different but many of us actually found comfort in AI's.