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

First of all, I want to send a hug out to you and let you know you are not alone and surrounded by so many women who are and have gone through this. I will be praying for healing for you on 4/29. I've just marked it on my calendar. You'd be surprised how prayer works. Well, it was a very personal experience for me with the Radiation, my numbers were low, but of course my surgeon encouraged me to go see the Radiologist, which I did. But what really changed my mind was I was not going against science or what may indeed be a good and recommended treatment, I really studied about it and with what I've seen in other women after the treatments, something said not to actively pursue it. Again, my numbers were low, less that 9% so I opted not too. Please listen to your doctor and look at your own situation, and you will make the best decision for you. I have been on Anastrozole for almost 3 years and I am a active 63 yr old woman, and I have had a bit of tiredness at the beginning, but no other side effects. My oncologist says I should be a poster child for Anastrozole. But because I am still working so much I really don't have time to think about any aches or pain, I'm of the mindset, mind over matter, but stay active, exercise and eat right, and get good sleep if you can. Please let me know how your appointment goes and I will be thinking and praying for wonderful things to happen. Love and Life

There is a lot of variation. I have tests that go up, then down, then up. You have to look at trends. I actually made a chart of all my tests, every two years, since 2002!

Point well taken. I'm still reading about osteopenia but, having compared a 2015 DEXA with the done in September, 2021, and seeing negligible change my PCP dropped his suggestion of Fosamax. I hope more doctors are comparing DEXAs over time and see if the rate of change is changing as that could be an important indicator. Also.if any result looks odd it could merit a sooner retest. There is variability among equipment, generations of equipment, etc., so differing results are possible for reasons other than a change in one's actual bone density. I look forward to tests that measure more than just density as it seems an inadequate diagnostic tool. A few studies are looking at whether patients should refrain from taking calcium for a period of time before having the test to yield a more accurate diagnosis in case newly ingested calcium shows up as bone but isn't (yet).

Regarding my comment "You only have osteopenia. I had osteoporosis for 14 years w/out fracture." Just want to clarify that I am not suggesting others wait 14 years to treat! I had med sensitivities and other health conditions that caused my endocrinologist to have trouble treating me. My comment was meant to reassure those with osteopenia or early osteoporosis, but not to encourage avoiding treatment when needed.

This sounds very similar to my case. My surgeon, however, thinks she can revise the original lumpectomy. Surgery is scheduled for 4/29. I have an appt set for a medical oncologist and the rads doctor’s office is supposed to call me this week. May. I ask what caused you to skip the radiation? And do you have any side effects from AI?

Dear Sister Warriors, I'm just so encouraged by all of your words and experiences, and the connection we all share with this darned old breast cancer. I'm 64 years young and own my own business, so I'm so grateful to have the energy to rise and shine everyday at 6:00 am and work until 6:00 pm. Three years ago I got the same horrible news that each of you received- I'TS BREAST CANCER! After discussing with my doctor the next steps, and making a decision of how to proceed, I went to my car and just cried. I called my partner at work, and told him and there was silence, then he said WE WILL GET THROUGH THIS. I cried even more. My cancer was not an aggressive cancer, I had a lumpectomy, and after that, they found some cancer cells around the lumpectomy, so they suggested that I remove the breast. I asked about the other one and they said I would have to have a mammogram every 6 months, so I said take them both. I opted not to have radiation as treatment, but have been on Anastrole for 3 years now. I've changed my eating habits, I'm exercising more, and paying attention to my body instead of taking it for granted. I now am making time for me, and not just going through the rat race chasing the cheese. It is so important to make the journey mind over matter. If you think positively, you will beget positive reinforcement back. Believe in your healing, take care of yourself, be mindful of all your experiences, and know that each of us have each other to talk with, to cry with and especially celebrate those moments in life with. Make your journey count and the pains and anguish you face daily, will become less important than the accomplishments you make each day.

Love to all of you sweet sisters, blessings for calm, peach and happiness in each of your lives. God Bless.

Oh, gosh, thanks for the clarification. I wish that I'd never mentioned the OncotypeDX online misinformation as I fear it led to more confusion. It's just that I spent a lot of time talking to people at OncotypeDX trying to understand exactly what facts I could safely infer or rely on for my low-risk score. And then read other websites that completely misrepresented the tests intrnded utility and I hoped to spare others taking the test an erroneous conclusion.

Thanks again for the correction and kudos to the doctor for being spot on about the test as Oncotype hears about many who clearly misinformed patients.

@callalloo. I mistakenly inserted "only" when quoting Dr. Pruthi. You are saying the same thing as Dr. Pruthi. "Oncotype DX Breast Recurrence Score is NOT used to predict the benefit radiation."

Ugh typo:
This is counterintuitive and I kind of wonder if any doc is saying, well, the Oncotype score shows low risk so you had better have radiation!! (In fact I got the opposite!)

Darn, I'd hoped we'd finally clarified this and dropped the subject which I wish I'd never brought up in the first place p but only did so to help others dealing with breast cancer and it's often-opaque decisions. And benefit from the hours I put into learning from Oncotype exactly what one could reasonably infer from OncotypeDX results.

Sorry, but Dr. Pruthi's statement is in direct conflict with what I have been told, four times now, by Oncotype management and further confirmed by a scientist who worked on the creation of the test. And conflicts with what Oncotype's legal department cleared in a letter to me.

It also conflicts with the text from Oncotype's website, which you included, which also makes no mention of radiation inferences which the OncotypeDX test can be used to support.

The only treatment decision the test is designed to 'predict' is a theoretical expected overall benefit of adjuvant chemotherapy, all other things being equal.

So the doctor's statement, if quoted accurately,  that 'the "Oncotype DX test is not used only to predict the benefit radiation..." is incorrect and would be denied by Oncotype.

That is, it is not only "not ONLY used to predict the benefit of radiation" it is, in fact, not used at ALL to "predict the benefits of radiation."

It's discouraging that physicians are so clearly not reading the OncotypeDX literature, stats, cohort studies or website. And mystifies me. But if doctors don't understand the OncotypeDX, patients are being misinformed and that's a problem.

If, by some non-obvious logic, Dr. Pruthi is using the OncotypeDX's Recurrence Score or Risk Score to make assumptions on her own in some way, about the benefits of radiation, that would be a use of the algorithm not intended, encouraged or supported by Oncotype according to Oncotype. That is she would be predicting, but not the science-based objective genetics-focused OncotypeDX.

Or perhaps the doctor is thinking of some other test entirely? [One problem with Oncotype tests, which some there afpgreed with, is the very similar names for very different tests. As they continue to develop more tests, it could be a patient-physician nightmare. It might be possible to, in a round-about way, to make some treatment inferences based on the Oncotypr DX Breast DCIS Score Test but that tests a different cancer than is eligible for OncotypeDX. Apples and oranges...