Aromatase Inhibitors: Did you decide to go on them or not?

The link went to the article, not the study. The link to the study cited in the article went to an error page.

I have found errors of fact on breastcancer.org (and other sites). Therefore, I always go to the actual study to read it for myself. But, because the link isn't there, I have no idea if the study is accurately reflected or if, as frequently happens, the writer cherry-picked data points out of context.

I've posted links to many studies in the short time that I've been a member. Or have provided links where asked but I do not have a complete bibliography of everything I've read at hand. I'm not certain that that lofty standard is being consistently applied though which is a different point.

At any rate, since I'm not taking anastrozole, I have no personal experience to share. I mistook this as a venue for those considering taking it and wanting to know the pros and cons others already know about the drug.

Whether you report yourself isn't an issue for me either way. It seems silly to me, and you certainly don't need to on my behalf, but I admit to possibly not understanding this forum.

Thank you for continuing to provide balanced, evidence-based information to help people with their decision-making, which is ultimately a personal decision between patient and oncologist weighing indicators and personal prefences tailored to the patient.

It is a good time to review the Community Guidelines. Please read in full here: https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

In particular, I'd like to underline guidelines number 1 and 2, which I'll include here.

1. Be careful about giving out medical advice
Sharing your own experience is fine, but don't tell other members what they should do.
- Experiences and information shared by members on the Mayo Clinic Connect are not a substitute for professional medical advice, diagnosis or treatment.
- Never disregard professional medical advice or delay in seeking it because of something you have read on the community. See the full Disclaimer (https://connect.mayoclinic.org/disclaimer/).

Mayo Clinic provides high quality, expertly developed health information. Visit https://www.mayoclinic.org/

Medical tips or information may be removed if a member:
- Tells another member what to do
- Attempts to provide a diagnosis for another member
- Makes a medical statement that cannot be verified clearly as coming from their own personal experience
- States information as fact or makes a claim that is not properly referenced
- References information that is not evidence-based and/or does not come from a verified medical expert source.

2. Remain respectful at all times.
- Exercise tolerance and respect toward other participants whose views may differ from your own. Disagreements are fine, but mutual respect is a must.
- Be inclusive. Not everyone shares the same religious or political beliefs. Don't impose your beliefs on others.
- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

This should be a forum with diverse opinions, and that diversity is most helpful for people trying to decide on treatment.

I have actually taken Femara for 5 years and my personal experience was relatively benign. As I have posted, any joint pain was alleviated by walking 45 minutes. The first 20 hurt. My oncologist told me she had heard that from others. Also, side effects change over time with hormonal meds: the body tends to adjust. But of course some people really cannot tolerate them.

We also have to remember that the five year point is now arbitrary. Many women take AI's for 7 or 10 years now. And also we have to remember that with hormonal cancers, risk continues to rise, so we have to look at recurrences at 10 year, 15, 20.

That said, I had a Breast Cancer Index done at my 5 year point that used my original pathology slides, and told me that EXTENDED hormonal treatment was of low benefit for me (similar to how Oncotype evaluates benefit for chemo). Their site says that 95% of women do not benefit from hormonal therapy after 5 years. The test is approved by the NCCN.

I was told not to extrapolate those results to interpret them as indicating my first 5 years were of no benefit.

I think everyone can make their own decision, using many different factors that are very individual. My main concern on public forums is that people who experience side effects tend to post more. I hate to see so many people say they are afraid to try medications that may actually be both tolerable and helpful. These meds are life-saving for many, and so potent against cancer that they are used for metastases.

This was not meant to be adversarial, just informative. If you think my comment is not aligned with Mayo values, I apologize. I will report myself.
I just clicked on that link and it went to the research news page on breast cancer.org.
I am not nudging you to not share facts, I might be nudging you to either post the links as Colleen has asked on another page of all of us, or stick to personal experience.
I might be nudging this conversation to expand to include more than tests available for risk, and bone health, as I believe an expanded conversation encourages more people to post, not just more posts.

I don't know if I'm being nudged to stop mentioning studies which I've read because they might be unpopular. I don't know if tilting facts toward a desired conclusion is the requirement here. And I don't know if 'the values of Mayo Clinic' are such that open discourse about drug choices are discouraged. [I was a patient of Mayo Clinic in the past.l

If I'm participating in the wrong community, I will of course move to one more encouraging of fact-based sharing.

But I do know that the article you just cited cites a study on a webpage that doesn't exist as I just clicked on it.

Whereas I know that the studies I read are the studies themselves.
I have been scrupulously diligent in making sure that I post facts or, when just posting my opinion, identify it as such.

I thought and think that people seeking information on others' experiences with drugs, treatments and medical protocols are hoping to get a balanced perspective and that discouraging the realities of some actual negatives cannot be in keeping with Mayo Clinic's approach to the art and science of medicine,

I would like to add some new questions to the equation of deciding to take endocrine therapy or not. To those of you who took these drugs or decided not to. How much did the treatments you had for cancer weigh in?
Were you more likely to refuse if you had minimal treatment, say lumpectomy and nothing else?
Were you more likely to take it if you went through high dose chemo, multiple surgeries, radiation or all of the above?
How much did age, and heart health weigh in the decision?

I am going to jump in here and post this because it is more aligned with the statistics I deal with in my circle of friends.
I also feel like we need to focus on helping women process the best decision for themselves. This means helping them to understand their situation based on our lived experience of taking these drugs, or the process of deciding not to take them. https://www.breastcancer.org/research-news/not-taking-hormonal-tx-leads-to-more-recurrence

It was a stat that I came upon probably a dozen times when I did a deep dive on Google Scholar and read every study, within the past ten years, on estrogen-positive breast cancer. The non-compliance for post-surgery adjuvant hormone theory, within the first five years, was repeatedly cited as approximately 50% so I assume that it's an accepted statistic in the breast cancer field. I'm sure you can find it by deep-searching on Google Scholar. That's the venue for filtering out general-public articles and so much of the fluff poor-content cut-and-paste articles clog up the search results. I don't remember though if the 50% non- or fall-off compliance separated stats for tamoxifen and AIs. And an oncologist I saw referred to it, so I just assumed it's current thinking.

There was one very-flawed study of Kaiser-Permanente breast cancer patients, looking at how many, prescribed, free, post-surgery anti-hormone drugs did not, or stopped, taking them within 12 months and the non-compliance rate was over 50%. Kaiser was unable to question all the several thousand (if I recall correctly) women who non-complied but, which is interesting, 80% of the ones they could locate, five years later, had not had a cancer recurrence.

There was one article, I think in JAMA, where an oncologist questioned the ethics of making 49 women take aromatase inhibitors, with their very serious side effects to, only maybe possibly result in 1 of the 49 maybe not having a recurrence of breast cancer, and the remaining 48 suffer any side effects for no defensible reason. His argument was whether that was, in fact, good medical practice and suggested prescribing physicians make extra effort to educate the patients about the side effects that were (so far) known.

If I had the URLs at the ready, I'd be happy to post them but I lost bookmarks on my tablet when upgrading.

As to OncotypeDX numbers, I don't know the difference between the Recurrence Score and the (I assume) deruved Risk of Recurrence result. I 'think' but that's just a guess, the RS might be the industry wide accepted stat for, say, a Stage X invasive DCIS, with Y lymph node involvement of Z size. And the Risk score is where the genetic analysis of the 21 genes puts that patient vis a vis the wider data pool.

But that's just guess. If someone reading this had a higher Risk than Recurrence Score maybe that would be suggestive. And if I ever talk to Oncotype again! I'll ask and post as I'm curious too. But it might be a complicated derivative of their proprietary algorithm and of no value to us here.

Can you cite that 50% figure for the number of folks who go off AI's? I have 3 friends who did 5 years as did I, so I am curious on this.

I am still confused by the fact that your Oncotype score is higher (by one) than mine but risk is so much lower (half). If you talk to Genomic Health I hope you will share! It makes me wonder if they take stage or grade into account when interpreting a score.

The test that considers 5% risk of recurrence high is a different test from the OncotypeDX that I took that yielded a 3% risk of recurrence if I took AIs, meaning 5% if I did not. They are different tests, measuring different things and using differing statistical models. I don't want to confuse people about this.

The current thinking is that the rate of bone loss, from osteopenia to osteoporosis, while on aromatase inhibitors is faster than from osteoporosis to worse osteoporosis according to my endocrinologist who was recruited to Cleveland Clinic from the NIH where he worked on bone loss studies.

There are two issues at play; 1) the effect of estrogen depletion on bone density (and other things) and 2) the process by which aromatase inhibitors accomplish this.

The latter, with the accompanying side effects, which cause over 50% of women to discontinue the drug prematurely, is why research scientists are working to develop less toxic