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

@callalloo thank you. I am going to call my oncologist Monday 4/25 and get a referral to the bone health Dr. I want to establish w/ her to follow my osteoporosis, as no one right now is. Thank you for info. I may call my insurance as well as the imaging folks to get their understanding of what is covered and when. Thank you for the info.

You can get a DEXA before any due date according to an oncologist I saw because of having breast cancer. He got a friend's insurance to cover it as she was at high risk for osteoporosis before going on anastrozole. Even if the insurer declines, over half of the appeals win. And, from the insurer's perspective, the estimated cost of covering osteoporosis risks is a lot more than preventing further bone loss. A 'no' response is often the first step that leads to a 'yes' response...so noted an instructor of negotiation skills once ;-).

Having said that, the DEXA is X-ray technology so that is more radiation to consider?

The Breast Cancer Index and Prosigna Assay consider 5% to be "high risk." The Oncotype considers it low risk. So even at this basic level, decisions are confusing. It is good to remember that with hormonal cancers, risk continues to increase over the years. @jaynep my score was 8, and I did 5 years of Femara, with few problems. Someone else might make a different decision. My own view is that it is good to try a med before declining, because many do not have side effects that are troublesome.

Thank you. It will be three years since my mastectomy. I am taking infusion Zometa every 6 months. I'll look at my records, but think I'm not due for another dexa until 2023. I've had 2 zometa treatments and been on AIs for almost 3 years, so I would like an update prior to 2023. I'll talk with my oncologist. I am 'hopefully' going to get a referral from him to see a Bone Health doctor and discuss all of this with her. My Onco doesn't seem in tune with what is going on other than ' that's the protocol "or t"hat's what the studies show" or 'the insurance won't pay for that'. He isn't looking at me as a person, IMHO

Do you mean the oncotype dx test? Yes, that has been submitted. I see the radiation oncologist on May 9th and the medical onco on May 12. However, the hospital system here posts test results before you see the doctor and my score is 13 and there’s a notation that nine year recurrence with AI and Tam only is 4%. Not sure what all this means but I guess I’ll find out.

Good question. I had my cancer diagnosis in 2/15. I had a
DEXA in 2014, 2016, 2018. So by coincidence I already had my baseline and the two year interval meant my bone density was scanned one year after starting Femara, but the usual two years after my last scan.

I would ask you doctor and your insurance. I know that now, with severe osteoporosis on meds, I am authorized to have DEXA scans every year. It is possible the same is true during AI treatment (probably with MD letter of medical necessity/preauth.) It makes sense. I just didn't have to seek that because of the timing of my 2014 scan.

ps the most important year is the first, on an AI, in terms of bone density loss, in my experience...similar to the drop in hormones at menopause

@windyshores how often were you able to do a bone density test. I think it is every 2 years, but for us taking meds that effect our bone density, I would THINK we could initially have the testing done yearly for the first years, then go back to regular schedule.

A few tips. I distinguish between more immediate reactions to ingredients, and longer term reactions to hormonal changes. For the former, try different manufacturers, or even brand name, and then try a different type of aromatase inhibitor.

For the latter, hot flashes happen at first and tend to fade. Bone density dropped then stabilized for me. Any joint pain was relieved by walking more than 20 minutes. My oncologist told me she heard this from many patients: a short walk hurts, a long walk doesn't. For me 45 minutes did the trick.

Don't expect misery! I miss my Femara: it was my security blanket.

Thanks so much for your feedback. It really helps. At this moment(my opinion varies minute by minute it seems) I do plan to try anti hormone therapy but I’m pretty sure I won’t continue if it’s misery. I’m glad you did well and hope you continue to do so. Thanks again…it means so much!

There are two numbers you receive from the OncotypeDX. The "Recurrence Score Result (RS) and the "Distant Recurrence Risk at 9 Years." So I'm guessing that, in your case, the former is 13 and the latter is 4%? [My numbers were 9 and 3, respectively. The risk number is derived from the RS by some OncotypeDX algorithm but is not a linear, direct calculation from what they told me.]

That's good news and I hope it provides a bit of comfort. You might decide to 'throw everything at" the remaining cancer risk, or not, but take comfort that that cancer doesn't put you squarely in the country-wide risk with people who might have comorbities or negative lifestyle factors that you know don't apply to you.

I found the OncotypeDX test very helpful. For one thing, even if I took anti-hormone therapy drugs, I'd still have the remaining 3% risk in theory. I decided that the additional 2 percentage points of "no drugs and 5%" was my path. And if the cancer does recur, I'll know it had a 3% chance even if I had taken the anastrozole. Cancer is like a lot of situations in life where there are no perfect decisions except, maybe, in hindsight.