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

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.

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.

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.
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- Personal attacks against members or health care providers are not acceptable. Such posts will be removed.

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.

TRUTH ! Agree w the above post " 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. " So many different AIs to choose from , seems to be a dr's preference, or an individual reaction preference . Cancer has taught me we are all so different . Find what works for you , have confidence in that , and at the least, may the placebo effect positively boost you ! HUGS.

There are three different AI's, and within those categories, there are different manufacturers of generics, as well as the original brand name. I switched from generic anastrazole to generic letrozole to brand name Femara and then stuck with that for 5 years.

My attitude, with serious cancer or serious osteoporosis, is to do everything I possibly can to tolerate side effects so that I can get the benefit of the meds. With cancer meds, that meant, mainly, for me, movement for 45 minutes/day. Tai chi and walking. Everyone is different.

I think we need to be careful making generalizations about these meds because each of us has a different cancer risk of recurrence, different co-morbidities, different ages, and different motivations. It is possible that many non-compliant patients had DCIS or very low risk Oncotypes.

Mine was grade 3, with LVI. For 5 years, I would have prioritized quantity of life over quality, so I had the best chance of being around for my kids. Luckily Femara did not really affect my quality of life.

I am almost 63 and have been on Anastrozole for approx 6 weeks prior to my surgery, I am now 4 weeks out from surgery and having heart racing issues between 70-132. My normal heart rate is in the 60's. Now, I am basically doing nothing but sitting and I am NOT a sitter. Prior to surgery I walked 3 miles per day and am a speed walker, now I am strolling a short distance, then have to sit down due to my heart rate going so high. The only thing I can think of that could be causing this is possibly that prescription I was on. I am currently wearing a 48 hour heart monitor and am very concerned. So, has anyone else had this same trouble from the Anastrozole and now that I have been off of it for 11 days is this heart issue going to go away or am I going to live with this for the rest of my life. I was also having memory issues and joint pain from the drug.

It is possible the heart rate go up from med, even without physical activities, including
stress, weather conditions, food, overwhelmed , etc.
I am 82, reasonably active, have paroxysmal arrhythmia and increased heart rate for years , that was under control with med.
After bilateral lumpectomy a year ago I couldn’t stabilized the HR by myself, went to ER, where it was normalized with metoprolol.
Therefore, out of fear for arrhythmia , and heart problem I refused any radiation and/ or chemo after surgery .
I am taking now 1/2 of Tamoxifen for cancer reoccurrence prevention and watch the possible ( hopefully not) side effects.
Since the Tamoxifen is depressing the estrogen the side effects ,as hot flushes , ovarian problem could occurred .
And my chronic UTI is worsened.
But again we have to weight pros and cons of the different med side effect .

Thankfully there are quite a few choices of hormone therapy, I am sorry you have struggled on Anastrazole. There are quite a few folks here who have done well on a second or third choice. Usually after a break to allow the side effects to subside.
I noticed you took the drug for 6 weeks then stopped after surgery, are you 11 days out from surgery?
Has your doctor suggested another medication to try?

Tamoxifen doesn't actually decrease estrogen. It blocks estrogen receptors. In fact over time apparently it can increase serum estrogen!
https://pubmed.ncbi.nlm.nih.gov/9168075/