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

I switched from Anastrozole to Tomoxifin because of memory loss with Anastrozole. Unfortunately shortly after starting on Tomoxifin, I broke out in severe hives. It appears that I’m allergic to something in Tomoxifin. My doctor then switched me to Exemestane. It’s better for me, but I still have some minor side effects. I don’t think any of these drugs are free of some kind of side effects for most of us. We just need to find the one that’s has the least side effects for each of is individually. It’s certainly not pleasant, but I suppose it’s better than cancer…

For someone who does not yet have osteoporosis, I don't think there is a 100% chance of needing osteoporosis meds after or during an AI. Before being osteoporotic there are natural ways to protect bones and I would rather go natural with bones than with cancer!

If significant bone loss does occur, some people do short term osteoporosis meds (see Keith McCormick) and then maintain with natural methods.

With hormonal cancers the risk continues to grow so that 5% (which one test considers high risk) will continue to increase over time. With an early stage cancer that may be acceptable to some, but just want to mention that for balance 🙂

Congratulations on figuring out what you want! What is the Mistletoe treatment? I’m living temporarily in Europe.

When looking for and evaluating complementary therapies, I usually turn to NIH's National Center for Complementary and Integrated Medicine (NCCIH) website https://nccih.nih.gov/

In the section "Health Topics A-Z" current therapies and conditions are listed explaining the most recent evidence, cautions and potential of future studies.

Here is their information on
– European Mistletoe https://www.nccih.nih.gov/health/european-mistletoe
"European mistletoe is not a proven cancer treatment. It should not be used as a treatment for cancer outside of clinical trials."

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

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.

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.

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

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 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,