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

Severe bone loss may not occur on aromatase inhibitors. It depends on starting point and rate of bone loss for an individual. I had a drop in bone density when I started, but the rate levelled off after the first year. I started off with osteoporosis and after five years had no fractures, even without bone meds.

The bone issues can be addressed with biphosphonates or Prolia during treatment with aromatase inhibitors, and have an added protective benefit for cancer. If a person cannot tolerate those, then Forteo, Tymlos and Evenity are options to grow bone back.

This decision will also depend on ER+ status, other pathology and Oncotype or Mammaprint scores. For many of us, the decision to take hormonal meds was easy and we dealt with bone issues if they arose, because cancer is life-threatening if it spreads.

Tamoxifen is another option for those concerned about bones, since it does not cause a decline in bone density and may even help with bones, since SERMS like Evista are used for osteoporosis. Here is one study:

"In the women given tamoxifen, the mean bone mineral density of the lumbar spine increased by 0.61 percent per year, whereas in those given placebo it decreased by 1.00 percent per year (P<0.001). Radial bone mineral density decreased to the same extent in both groups."

I did not experience any significant side effects from an aromatase inhibitor, nor did any of my friends. My only suggestion, validated by my oncologist, is to exercise more than 20 minutes: the pain goes away if you exercise longer.

Once one is taking a new drug, or trying a new diet or making any change in one's life, it seems logical to assign that change to any other new changes one notices, but contemporaneous changes are not necessarily cause and affect. All of the complex things that would have happened anyway can, possibly, just be occurring on as they would have anyway. Having said that, I decided not to take aromatase inhibitors but 'could' change my mind. The one thing about taking them is that it's not an irrevocable decision as were radiation and chemo. As would be having anthing injected into the body, with a long, long half-life, which is one of my lines in the sand that I hope never to cross. That stuff can't be undone but one can try the drugs, and as others here have noted, try other brands or even a SERM if the side effects are discomforting. The downside, IF, one has a high risk of recurrence (which science cannot yet promise either way), is the lack of protection during time not on the drug. But that would be mostly offset by getting on it belatedly. My fear was of increasing the rate of bone loss because, honestly, the drug treatments for that condition, look like a Pandora's box of poor options and nasty side effects. And the accelerated bone loss was an absolute, not just 'possible, risk for the aromatase inhibitors as the resulting estrogen depletion is the driver. Thats not a popular statement but I hear from others with the same concern and want them to know others contemplate it too. And I've heard from people here whose oncologists failed to tell them about the bone density risk which is, to me, stunning medical negligence. But the fact is these are complicated decisions and, given others' personal risk choices versus one's own, easily confusing. Being willing to make them suggests an inherent courage that I hope is also reassuring.

I have been on anastrazole (+ Verzenio) for 8 weeks. This is pretty new (and mostly scary for me), too. I have not seen any side effects from anastrazole yet. I was pre-menopausal so they stopped it (with Zoladex) , too. Taking a walk helps me relieve stress and takes my mind away from it. I bake muffins, cakes etc. and be happy if they turn out good -mostly give them to my kids and friends. There's a lot of confusion on my side so cannot offer much help. Be strong.

I haven't heard about ErSO. Googled it and the story sounds interesting. There's a change . org petition to start a clinical trial for it. If anyone is interested, here's the link: https://www.change.org/p/systems-oncology-possible-breast-cancer-cure-drug/u/30162284

It is a scary time to be facing, but you will get through this. Think of all the trials you have been through in your life. Then realize you have conquered them all and survived.
I would also remind you that the few voices you read the most are only a tiny percentage of the people who have taken endocrine therapy. I took anastrazole for more than 5 years after 5 of tamoxifen. There were side effects and I look in the mirror and go “wow, I look way older than my years” but none of the side effects were so bad that I quit. Many women have little or no side effects from these drugs.
Deciding to take them or not should be an individual decision based on the best information about your cancer, and not on someone else’s side effects.

I feel I’m in a similar position as you I’m scheduled for a lumpectomy on Friday, followed by radiation and then anti-hormone meds. I had a spinal fusion nine months ago and a knee replacement two years ago. I”lol be 68 in July. Menopause was horrible for me. I admit, I am very confused and scared.

My mom was on anastrozole for 5.5 years after a DCIS with no spread and she has permanent arthritis now, memory loss, high blood pressure and cholesterol which she did not have before. She did not notice any side effects while taking them, but when she stopped it became more obvious what her possible side effects are. It's so hard to say if it was the anastrozole or not but those are her symptoms. I'm on tamoxifen as I had toxicity with the AI's confirmed by my Onco, so I'm struggling with hair loss and would love ideas as to how to try and lose less if it's possible while still taking tamoxifen.

Intermediate scores for Oncotype are 18-30 so a score of 17 is on the high end of "low." With that and grade 3, I think you are wise to power through with the meds. People are now taking them for 10 years, and my doc said 7 is as good as 10. Unfortunately I had to stop at 5 due to severe osteoporosis, but if my osteoporosis had been mild, I would have done another two years. I miss my Femara!

Thank you.

Others here are way more informed than I am about anastrozole but I thought that I'd read somewhere that aromatase inhibitors have a carry-over effect for some time after not taking them. Not sure for how long, or how strong, just that there is a lingering benefit?