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

Actually yes, some people will drop a treatment based on something they read or someone else’s experience with that treatment, I would not do this, but you would be surprised how many drop or even refuse to start because of it.
In this day and age financial toxicity from the price of treatments even with insurance can end up being a deciding factor, to me this is the saddest reason people give for dropping or refusing a certain treatment. I was just trying to get a clear picture so that I could offer support if possible in the context of this forum. I am not giving medical advice.That is not allowed here, but some side effects can be managed to stay on treatments. Some treatments are so bad for certain people that alternatives have to be explored. Do you know yet if your treatment is working to reduce Mets, usually a scan every few months is used to monitor it? Have you talked to your doctor about the side effects?

Thanks. Yes. Met with Dr last week and will again this week. Dr plans the scan for June after I would have been on Ribociclib for 3 months and Letrozole 5 months.

I took the questions about Oncotype DX to Dr. Sandhya Pruthi at the Mayo Clinic Breast Clinic. She confirmed that the "Oncotype DX test is not used to predict the benefit radiation. The Oncotype DX Breast DCIS Score test can help determine if radiation is indicated. Patients with DCIS- ductal carcinoma in-situ- may have this test ordered by their oncologist or radiation oncologist to determine if radiation is indicated."

Here is further information:
- What is the Oncotype DX® test, and what makes it unique? https://www.oncotypeiq.com/en-CA/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/about-the-test
"The Oncotype DX Breast Recurrence Score® test has been developed for patients with early-stage HR+, HER2- breast cancer to:
- Precisely identify those patients who will and will not benefit from adjuvant chemotherapy
- Determine the magnitude of chemotherapy benefit
- Provide an individual’s risk of distant recurrence"

- About the Oncotype DX Breast DCIS Score test https://www.oncotypeiq.com/en-US/breast-cancer/patients-and-caregivers/stage-0-dcis/about-the-test

@colleen after I posted that, I posted info on a study that showed that radiation benefited those with low or medium Oncotype scores, but not those with high Oncotype scores. I posted a link. This is counterintuitive and I kind of wonder is any doc is saying, well, the Oncotype score shows low risk so you had better have radiation!! (In fact I got the opposite!)

I had initiallly suggested to @callalloo exactly what you are suggesting: that the score could be used for guidance about radiation. But perhaps things are more complicated. Then again, this was just one study!

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...

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!)

@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."

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.

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.

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?