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

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?

I'm confused by those tests risk evaluation. I'm not familiar with the tests as I only had the OncotypeDX. Is their (not low) 5% a risk of loco-regional recurrence? If so for what time span? If they are analogous to the OncotypeDX risk analysis, what do they consider a low recurrence risk?

A 1% or 2% would be lower than the average risk of recurrence for estrogen positive cancers IF one threw every possible treatment at it, including radiation, chemo and adjuvant anti-hormone therapy. So do those tests have no low risk at all or only the narrow 3-4%? That seems to be threading the needle so carefully. Or are they of more value in estimating the higher risk levels?

Conceptually, it's hard to get a risk much lower than 5% as cancers have recurred in people who did everything to prevent them. To the tune of 3%-4% if my oncologist is right. At any rate, just curious, but do you know what risk estimate is considered low for those firms' testing protocol?

@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.

Go! Team Sequoia! lol

I am still taking them, my oncologist will keep me on it for the 5 yr timeline then re-evaluate then.

I have taken 2 different kinds and it messed with my depression and anxiety. Off them for 6 weeks I don't know what they will do after that. I do feel better and less suicidal

I will dig out my records. For one of those, I think it was close at 4.5% for the low risk cutoff. but I don't want to rely on memory. I did these tests at the 5 year point of AI treatment. Breast Cancer Index tells you benefit of continuing on anti-estrogen meds, since many now do 7-10 years. It gives risk of distant recurrence for years 5-10.
Prosigna Assay, also known as PAM50, also measures risk of distant recurrence in years 0-10 for those treated or going to be treated with anti-hormone meds.

You mentioned "throwing everything at" a cancer, including chemo. That concept went out the window with genomic testing. According to the Oncotype, there is no change in risk by not doing chemo for those with scores indicating no benefit. In fact, chemo may do more harm than good.

I will dig out my scores. I was shocked that with my Oncotype of 8, these other tests had me at high risk. Oncotype basically told me that chemo was not of benefit. But with grade 3 and LVI I had my doubts about low risk. Nevertheless I am 7 years out, knock on wood!

I’m so sorry. Thanks for the information. I’ll be praying for you.

I am stage 1 breast cancer and have been on Anastrozole since last august. I am 64 years old. I have a 9 percent chance of cancer returning if I am not on this medication. I am going off this drug based on the following. The side effects are destroying my quality of life. I am mean irritable, can’t sleep, my chest is tight, I have mucous in my nose, sore throat, headaches and brain fog. When I bring up the side effects the doctor always tells me they can give me more drugs to counter the side effects. They offered me anti depressants. Then it was Zometra for osteoporosis which can cause my teeth to fall out. And they will because I have thinning gums. It is just adding one drug after another drug and for what? Thirty years ago my 86 year old mother went to Mayo Clinic telling the doctors we have a history of osteoporosis in our family. The doctors put her on Fosomax for several years. She paid $350 a month for her medication. The result of this drug did MORE HARM and has made my mother osteoporosis so bad she breaks bones at any little fall. She has lost 7 inches on her height. She has broken her rib by putting on her seat belt. She has broken her back when laying down at a doctor office in her late 70s. She had to fuse her back together at Mayo. Every time she breaks her bones it is a trip to ER hospital and massive rehab with tons of pain. This Easter she fell while using a Walker and is now in hospital and rehab for broken bones! She has been in and out of hospitals because of her osteoporosis and is massive pain! She cries every day. Recently 7 doctors at St Cloud hospital looked at her trying to figure out what happened to my mother. Hell it was the damn drugs they gave my mother thirty years ago that did this to her.

I now follow a wholistic doctor. I have bought myself a Peloton and ride my bike every day. I go to Y and do weight bearing exercises. I have lost 30 lbs and eat healthy. None of this is ever talked about at Mayo while I battle breast cancer. It is drugs drugs drugs! We are in a profit driven sick care system. We pay the most for health care out of any other G-7 country and we have the lowest mortality rate. You need to be your own advocate for your health.

While I agree with getting healthy to improve ones quality of life, and help a person to live a more productive life. It will not treat your cancer, or prevent another one.
I can feel how distressed you are about your mother and her current condition. I would be as well. Sadly not every drug works the same for everyone, and science changes and evolves all the time. The point of science and research is to continually do better.
No researcher goes into medicine to create a drug to ruin someone’s life, and most researchers do not work for pharmaceutical companies.
They work everyday in a lab in a university or medical center trying to come up with ways to help patients.
While I agree that not everyone needs every drug, it would be really sad if there were no drugs to offer the person who went to the doctor looking for help. A truly suffering person goes to the doctor looking for the fix that will cure the suffering. There isn’t always a perfect fix. Is it always a cost versus benefit equation using the best available information at the time.
If you are unhappy with your care at Mayo Clinic please contact patient services, @colleenyoung is always pretty quick with a link for this.