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

I totally understand and believe that some people have tried and cannot tolerate these meds.
My issue is those who try to influence those who are struggling with a decision by being only negative and claiming there is no proof that these meds actually work!
Sometimes we need to encourage others who are trying and having difficulty… sometimes it just takes time.♥️It could save their life.

I thoroughly agree with you on that that no one should try to influence someone else's decision. The best value in these forums, I think, is that people can read others' experiences and develop a list of questions for their own doctors to answer to their satisfaction. Or someone mentions a protocol, like genetic testing, that a doctor didn't suggest and the reader can ask about it or get a second opinion or even decide to change oncologists.

I think of the corny adage, "We're all in this alone together."

I would love to know about that new pill!

Exactly… here for positive reinforcements!
We are all in this together…I am always looking for the rainbow after the storm! Love to hear good news …new treatments and more to be positive about on this forum!

I see my oncologist August 1st! I will get the info and gladly share♥️

I just want to say, to anyone contemplating an aromatase inhibitor, that I have found that any medication that affects hormones (Tymlos for bones is another one I take, the side effects change over time (and sometime even fade) as the body adjusts. People could perhaps start off alternating days, which my doctor approved.

I also think there are two sets of side effects to consider: the effect of the drug and the effect of estrogen deprivation. I honestly don't know if these are one and the same but I personally found that side effects changed over time and then lessened.

I’ve talked with 2 oncologist & they were not adamant about taking the AI med, left it up to me. I’m 25 years post menopausal & feel there’s very little estrogen in my body anyway. Had no lymph inv. with clear margins. Oncotype was under 25. So, I’m hoping with some lifestyle changes & exercise I will be ok,

A score over 18 often resulted in chemo at the time I was diagnosed, 2015. But now:

Women over the age of 50
For women over 50:

A score of 0–25 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 26 or above means you’re likely to benefit from having chemotherapy in addition to hormone therapy
Women aged 50 or younger
For women aged 50 or under:

A score of 0–15 means you’re unlikely to benefit from having chemotherapy in addition to hormone therapy
A score of 16 or above means your specialist will discuss your test result with you to help decide if you’re likely to benefit from chemotherapy

Thank you for such a well informed entry. I am one of those cases that was reported wrongly. I decided not to go with the flow and take drugs for five years just on the off chance that those drugs, with all their side effects, some long lasting, would prevent metastasis. I felt that I had to use subterfuge in order to keep on the good graces of my oncologist. Although none the three drugs prescribed ever passed my lips, they were all "discontinued because of side effects not tolerated". I quoted different side effects for each prescription. I am absolutely certain that I am one of many with similar stories. I do have metastatic breast cancer but absolutely do not regret those years free of drugs.

My onco and I are working very closely together. She actually has an interest in the reactions of women to these drugs. While we researched we found that it is only a 5% increase in chance for a better result. She is more interested in why I had this reaction. We have found through my geneology that arthritis in my genes, mother, sisters, aunt, father, uncles, etc. is brought to the forefront when taking these drugs, and only heightens these side effects in the drugs. We also found that the fillers used can have a dramatic affect, and if not tolerated, should consider a more pure drug, unfortunately not covered by most insurances. I see her every 6 months, along with my doctor. There are many studies out there, and I am fortunate to have an oncologist that realizes how strong these drugs can affect the body, while most only follow the studies in place and have little knowledge of other alternatives. The cancer may be at bay for a few more years, but the issues these drugs cause can create problems that make living with a decent quality of life quite difficult. I stand by my statement and I am very happy for you and others that you can tolerate these side effects. Good for you. Not for all.