macdebbie, I'm copying this over, with a few edits, from an earlier post of mine in the 'Rejecting Hormone Therapy' thread. Endocrine therapy provides 3 separate and distinct risk reductions. These 3 risk reduction benefits are not additive but if you are evaluating the 'Pros vs. Cons' of endocrine therapy, you need to include each of these 3 separate risk reduction estimates in the 'Pros' column so that it's the overall benefit of endocrine therapy that you are considering, not just the risk reduction benefit specific to 1 of your 3 future risks.

Endocrine therapy (Tamox or AIs) provides 3 benefits:

1) They reduce the risk of a local (in the breast area) recurrence, generally by about 50%. For those who've had a MX, this risk may be as low as 1% but for those who've had a lumpectomy + rads, this risk is usually more in the range of 8%-12%. Grade, size of tumor, surgical margins will all affect this risk.

2) They reduce the risk of a distant (i.e. metastatic) recurrence, generally by about 1/3rd. This is the risk that we all fear the most. AIs generally perform a bit better in this area; my MO said that AIs reduce risk by ~35% vs. ~30% for Tamox. For those who face a significant risk of mets, this small difference in efficacy can be important. For those who face a low risk of mets, the absolute difference between Tamox and an AI might net out to be less than a 1% reduction in risk.

3) They reduce the risk of a new primary breast cancer; results vary based on the study but I believe on average the risk reduction is approximately 50%. For those who've had a BMX, the risk to develop a new breast cancer can be as low as 1%-2%. But for those who've had a lumpectomy, this risk can be significant. All of us who've been diagnosed with breast cancer are at higher risk (than the average woman) to be diagnosed with a new primary breast cancer. This second diagnosis might be a different type of breast cancer and it could be in either breast. A new diagnosis could come anytime during your life, although for all women our highest risk years are when we are in our 60s and 70s. My MO told me that my risk to develop BC again was about double that of the average woman my same age who'd never had breast cancer before; the following study seems to confirm that: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720990/ . I was 49 at the time of my first diagnosis; the remaining lifetime risk for the average 49 year old is 11%, so my MO estimated my risk to be about 22%, although I had other factors that might have increased this risk. In addition to having a personal history of breast cancer, a family history of breast cancer, genetic mutations, and extreme breast density are some of the other factors that can drive this risk up. (And yup, I drew the short straw and was diagnosed a second time, 13 years after my first diagnosis.)

For each of us, even if we have a similar diagnosis, our risks in these 3 categories may be different because of a lumpectomy vs. mastectomy, or having vs. not having a genetic mutation or a family history of breast cancer, or having very fatty vs. extremely dense breasts, etc..

One additional point of clarification: Your Oncotype score, and the PREDICT and CancerMath models, provide an estimate ONLY for the second risk I mentioned, the risk of a metastatic recurrence. These models do not tell you anything about your risk of a local in-the-breast recurrence or your risk to be diagnosed with breast cancer again with a new unrelated primary breast cancer which could develop in either breast. Separately, the Tufts IBTR! nomogram provides an estimate ONLY for the first risk I mentioned, the risk of a local recurrence (with or without radiation).

Macdebbie, I have the same stats as you, as far as tumor size, etc. I had 16 whole breast rads and 4 boosts.

No Oncotype for me either. I was 61 when diagnosed. I am not sure of your age, but if you are younger, that would be a consideration. I've done 2.6 years on letrozole and my only SE is vaginal dryness which leads to a lot of UTI's. If you search under my name, I've written a lot about that SE, but I think it's finally under control. I've also gained weight, which sucks, but it's probably partially my fault. I'm always working on it.

I took a 3 month break from the AI, as I just needed to physically and mentally. Now, I am trying to take it every other night, because I really think that's enough. My MO said if I got 3 years on this drug, she'd be happy.

It's all a crapshoot and we are all different, with differing health needs. My RO told me I had a half of a percent a year chance of it coming back, MO said 3%. I've run the calculators too. There are no guarantees. I felt I should give it a go. Is it helping? Who knows. Please let us know what you decide to do.

macdebbie, I am taking tamoxifen mostly for the risk of a new cancer in the contralateral breast--reasoning RADS lessened the old tumor bed risk significantly to about 1.3% per the Tufts tool--and to change my systematic positive estrogen neighborhood environment (to borrow Dr. Love's way of looking at it) for any dormant BC cells that got around before my diagnosis. My risk levels are also generally low, but someone has to be in those figures and I'd rather it were not me. My tamox SEs are pretty easy so I think the benefit outweighs the risk, at least for now.

I hope my comment is not too off topic as I don’t want to highjack this thread. I have always been curious why the dosage is the same for all patients taking an AI. For example, I am on Armidex. The dosage is one mg. How is the dosage determined? I could need more or less or nine at all, because there is no test to determine how much I need personally. I have not come across any other prescription drugs that work that way.
I wish there was a test to figure this out. I think some women suffer unnecessarily on these type of drugs. In my mind this drug is all or nothing. It either prevents a recurrence or it doesn’t. If AIs were more tailored to each patient, the results could be even better.

Macdebbie, maybe it would be helpful if you asked for a referral to a cardiologist who also knows cancer and medications. I had a similar diagnosis and treatment as you, but a genetic heart problem. I found a referral to a university hospital which had a specialist dealing with these issues combined and looks at your individual situation. It was still my decision, but I felt better knowing more details before making a decision. Like said, there's no guarantee, but we try to make the best informed choice we can at the time. All the best.

I had posted this in another thread, but has a good discussion of evaluating the pros and cons of doing hormone suppression for early stage patients.

https://ascopost.com/issues/november-25-2019/breas...

"For women in their 30s, 40s, and even 50s who don't have any other serious illnesses, physicians need to be concerned about accelerated aging," Dr. Ganz continued. "If these patients are receiving very intensive therapy and endocrine treatment for a long period of time, it may be setting them up for some long-term effects, such as you see in children who have undergone cancer treatment," Dr. Ganz said.

Dr. Ganz concluded with a call "to weigh the quality and quantity of survivorship related to breast cancer therapy." Among the important considerations are the long-term nature of recommended therapies, chronic symptoms that can interfere with quality of life, and the potential for competing causes of death, especially in women for whom the risk for breast cancer recurrence is very low.

"I am completely in favor of treating everyone who needs therapy. I don't want to take away lifesaving therapy, but the right treatment for the right person has to be the long-term issue," she stressed.

Ibis,

Raloxifene is in the same category of drugs as Tamoxifen--Selective Estrogen Receptor Modulators. It should theoretically be less harsh than an AI. It is FDA approved for risk-reduction in post-menopausal high risk women who have not yet had invasive breast cancer. It also has a slightly different SE profile than Tamoxifen--i.e. no risk of endometrial thickening or eye problems (cataracts). It's probably worth a try; you could always discontinue if you hate it.

Pam, my understanding on why it has been pushed aside is because it shows efficacy, but lower efficacy than Tamox so they won't give it to invasive cancer survivors. They just stopped doing studies on it when Tamox was shown as more effective. I couldn't tolerate another SERM and asked to try Raloxifene. My first MO refused to prescribe it to me off-label. Another MO said he thought it was fine for me to try it if I wasn't going to take the other meds. Unfortunately it did not work out for me either, but I did try it. You may have to "shop around" to find an open-minded MO.

Always informative, Beesie.

Speaking of Dr. Ganz Bcat40 quoted above:

I didn't see a single clear criterium or approach suggested. Is she saying anywhere HOW to avoid or limit unnecessary treatments and improve survivors QOL? In the absence of any clear recommendations it's just another example of advice that has little if any applicability in real life situations and clinical practice.

My biggest fear about starting these AI drugs are two fold:

1) the cardiovascular risk and taking these long term, even 5 years for older people or any patient who has a family history of cardiovascular disease. I do.

2) these drugs can cause retinal traction. I have had retinal issues (PVD's common to all of us and retinal tears for me). Still followed by a retinal group and with my retinal tears so far I was lucky enough to have laser photocoagulaion to seal up the tears and not surgery. Still have plenty of floaters. My retinal doc has made my follow ups in shorter time for check ups-especially if I go on these. There is a concern on these drugs of eye issues. It is known and documented that Tamoxifen causes more maculopathy than the AI drugs but still.......AI's worry me.

3) Being single, if I experience a detachment is is sure not going to be the MO to come over and pick me up to head to the ER or to the Retinal office. I am and have been a strong , independent person but I am weighing all the risks as we all need to do before going on these toxic (IMO) drugs.