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

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

Here is the excerpted text from breastcancer.org:

For invasive:
"So, the Oncotype DX Breast Recurrence Score Test is both a prognostic test, since it provides more information about how likely (or unlikely) the breast cancer is to come back, and a predictive test, since it predicts the likelihood of benefit from chemotherapy or radiation therapy treatment. Studies have shown that Oncotype DX Breast Recurrence Score Test is useful for both purposes."
For DCIS:
(After the Oncotype) "Radiation therapy may be recommended for some women. Doctors aren’t always sure which women will benefit from radiation therapy."

I was surprised. Back in 2014 Radiation was not mentioned in the context of the Oncotype, only pathology. @callalloo are you saying this is mistaken?

Yes, I have adverse side effects. Are there other reasons to drop a drug?

This drug combination is designed to keep metastatic or advanced estrogen positive cancer in check. Typically surgery is not an option after cancer has spread to other parts of the body, unless it is being used to prevent specific suffering due to the size or location of a tumor.
Why is it that you want to drop the Ribociclib from your treatment? Are you having adverse side effects from this?
@windyshores have you asked your oncologist for a bone scan or a pet scan? I know that it wouldn't be appropriate all the time but if you are having additional pain, it seems warranted. Have you had any unusual fractures?

Yes but what prompted the scans? My oncologist does no testing of blood. I went in once with hip pain but it was arthritis. I am just not sure how any metastasis to bones would be caught for the large number of us in daily pain anyway!

I went through all these inquiries after lumpectomy. I was/am early stage ER+ PR+, 1.2 cm IDC, no nodes, Oncotype 8, but LVI. My margins were 2 mm except in one area where there was some evidence of atypical hyperplasia at 1 mm from the margin. I was very negative about hormone blockers from day one because of my osteopenia and only consented to low dose tamoxifen. My RO recommended no radiation. I called my breast surgeon who was skeptical and asked, what if you can't tolerate the tamoxifen? I researched the subject. The Tufts tool https://www.tuftsmedicalcenter.org/ibtr/ showed a good percentage ipsilateral risk reduction with radiation and I also found that radiation is considered more effective than hormone therapy in reducing risk of a new primary or recurrence. Given the LVI and small margin I requested whole breast hypo-fractionated radiation, which consisted of 16 sessions and no tumor bed boost. As it turns out, I could not tolerate tamoxifen and quit it. But I am finding anastrozole very tolerable. I take it in the morning and then walk the dogs and practice yoga, both physical actions perhaps lessening the pill's side effects. My point here is that we seem to be fighting the standard-of-care, but at what risk? Sure, I could reject radiation and hormone therapy because they may not lower mortality, but, as my RO said, I would perhaps confront another BC down the line. No thanks. I don't want another surgery or mastectomy when I am elderly. Also, I do not want to destroy my bones, so I changed my diet and keep up my exercise. After reading a number of books about BC, diet, and recurrence, I have become more open to NCCN standards alongside of alternative treatments. Our aim is the same: good health and no recurrence or metastasis.

If strontium is in the supplement to a significant degree, your bone density on the DEXA will look better than it is. Strontium is heavier than calcium and throws the DEXA off.

This occurred to me the other day... my DEXA fron 2021 shows very little difference when compared with one done in 2015. In fact my PCP twice compared them and the dates and said that they're nearly identical within a margin of error.

A friend suffered a broken mrck in 2015 and was hospitalized or in rehab for 2.5 years. When he was put in a halo contraption to hopefully enable bones pieces to reattach, I found the best 'bone formula' vitamin supplement that I could to keep him supplied with. I also started taking the stuff as it was on my kitchen counter.

I now ponder that the insignificant changes between the two DEXASCANs 6 years apart are attributable at least in part to the daily supplement. [The DEXA bone density decreased by hundredths of a percent in one case and increased by tenths of a percent in another.] At any rate, I'm continuing to take the stuff. An echocardiogram and calcium score test reassured my cardiologist and me that the calcium seems to not be building up in arteries as some people fear.