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

@ vivi1 I found the article you cited very informative. Thanks for sharing it

Has anyone taken raloxifine (Evista) instead of an AI? It's a SERM and is used to prevent or treat osteoporosis.

@windyshores My onco ordered the OncotypeDX. The hospital sent the tissue directly to Oncotype after the surgery in October. The Breast Cancer Index test would have been helpful too. I wish I'd known about the various tests earlier. Looking back to the diagnosis last fall...well I was in shock. No one in my family has had cancer other than father who died of prostate cancer the second time he got it. I was blindsided by the bad biopsy and only now realizing how much more I'll need to consider going forward in order to feel some confidence in a personal decision tree. I just keep adding to the list of questions I plan to ask the oncologist this week.

The Oncotype and Mammaprint are used when pathology is first done after surgery. The Breast Cancer Index is for deciding on continuing meds for years 5-10. They told me studies only covered that period of time but that since it showed no benefit for me from AI's for those years, I could maybe assume the same was true for years 1-5. However, after writing you before, I think it might be hard to get the Breast Cancer Index at this stage for you. The Oncotype is standard of care and in all the guidelines. I felt comfortable relying on it. The company reps are very informative and reassuring.

If I were you, I would try the aromatase inhibitor (I did Femara) and work with oncologist and endocrinologist on monitoring and possibly treating your bones.

I am sorry if I complicated things for you. AI's are very tolerable or even without side effects for many of us and with your scenario I am sure they will be very helpful.

You didn't complicate anything and I appreciate what I'm learning here as I am better prepared with even more questions for tomorrow's visit with oncologist. He's insufficiently informative and much of what I learned since surgery he should have addressed so I have his possible replacement lined up just in case. Also I have a letter from Oncotype correctly stating that the cohort pool for the OncotypeDX specifically precludes anyone who had radiation or chemo since the onco is adamant that the test assumes one first had radiation. I'm perturbed that this chief of staff for breast cancer oncology at an internationally top-ranked facility (not Mayo though) is citing invalid statistics even though I told him that Oncotype senior staff informed me correctly and he is misinformed. Now I have a letter from Oncotype stating that radiation is not assumed, which my PCP, breast surgeon and endocrinologist found surprising. [I wanted to assure them that I'm not a non-compliant patient but that the onco is just....well, wrong about what the OncotypeDX score means. And, yes, the OncotypeDX client support people have been excellent. I even received a call-back from a senior person on the science staff who reassured me that I understood correctly. And sent a follow-up email. He was dismayed that a lot of physicians are still incorrect about the protocol and information behind the test as he usually hears from doctors with questions. ].
Unrelated to the above, a friend, also a cancer patient, leaves her cell phone on audio record when she goes to a medical appointment alone so she can relisten later in case she misunderstood something or new information came up that she wanted to research later, including names of alternate drugs. Or side effects

Wow, I cannot believe an oncologist would be so misinformed. The Oncotype require that the cancer be estrogen positive. Is that what the MD is thinking of? How upsetting.

I had to stop all my drugs. The side effects made my life inbearable, swollen hands and feet, could not walk, short of breath all the time, dizziness, and on and on. I only got to take them for 6 months. I wanted to completely cleanse my body before starting tamoxifin, and it took a year and a half for me to walk unaided again. I didnt want to go back to that, and all the other mental issues attached, so I stayed off all drugs. I now have been clear for 2 years, walk 2 miles a day, (never walked before cancer) and feel better than I have in years. I eat a good starchy diet, no meat, dairy, eggs, or fats at all, no oil, I have lost 47 pounds so far and I am going to keep going. I follow the starch solution. My blood pressure has corrected and my cholesterol is better. Drugs cant always be the answer. I will take the 5 year promise and live a happier life!

No, he got those criteria correct. The onco radiologist said I had a 10% chance of recurrence in the same area as lumpectomy, which she could reduce to 2%. But only in that exact small area. This was before we received the OncotypeDX result which showed I have a 3% chance of "local or regional recurrence within 9 years" (e.g., anywhere on the body) based if I take a SERM or AI and X< 1% benefit from chemo. And (!) assuming that I had not taken either radiation or chemo before the tumor tissue sample was excised and sent for testing. That is, the OncotypeDX test is solely to help evaluate the risk/reward profile of chemo for that patient, for that tumor, with the 21 genes they analyze. Period. It excludes radiation from any consideration and is both predictive and prognostic with the latter being only with respect a chemo risk/benefit payoff.

That 3% risk translates to 5-6% if I don't take anti-hormone meds and already assumes I didn't have radiation.

But the radiologist continued to insist that I have a 10% chance of recurrence in the lumpectomy area that radiation could reduce to 2%. And the oncologist deferred to her though her pre-genetic-testing stat cannot remain applicable unless the OncotypeDX is garbage.

Here's my logic as I used when showing the OncotypeDX result to the surgeon, PCP and endocrinologist.

Let's assume that all people with, say, brown hair have a 10% risk of something where 10% is a rough industry standard based on statistics collected over time and not even representative of only current standards. One can say that I 'had' that crude 10% due to hair color (for stage 1A invasive DCIS that is ER+, PR+ and HER‐ tumor) and appropriate for the OncotypeDX protocol as mine was.

Assume further that left-handed brown-haired people with have a 3% risk (as the test suggested I have) for that 'something.'

That is I am in the subset of the data pool with 3%. The radiologist argued (fallaciously) that the 3% requires that I have radiation and the oncologist deferred to her...even though the OncotypeDX criteria specifically contradict that statement. And those doctors are dealing with patients at a very critical point in their lives when it is negligent to defend indefensible refusal to correctly advise patients as to what a test does and means.
But I digress.

The endocrinologist applauded me for being proactive in confirming the accurate interpretation. He said that 'we specialists' can sometimes over-focus on a small tree and miss the forest. And he learns a lot from his patients who are proactive and double-check their options.

The most senior person I spoke to at Oncotype deals primarily with calls from doctors and nurses and said that some recommend the DX test to determine whether radiation is advised which is a complete misunderstanding of the test, which is strictly to help in a post-surgery chemo decision. One aside that I found interesting is that the OncotypeDX test sometimes sees evidence of invasive cancer in tissue mislabeled or incorrectly under-diagnosed. So they immediately notify the medical provider.

By the way, Oncotype is writing both doctors (not mentioning a patient's query) to re-emphasize that radiation is a precluding criteria for the OncotypeDX and no assumptions about post-test radiation were studied or included or can be inferred.

I think that this situation bothered me so much because radiation, in my case of the left breast, is a serious decision and, if regretted later, undoable. And I would be the person living with the consequences of any of these decisions <wink> so might have a different risk-regret profile than the medical professional citing statistics. And I'm skeptical about statistics anyway until I can research their source and quality. A former economics professor used to quote Mark Twain's 'there are lies, damn lies and statistics.' IF the OncotypeDX is relatively valid, hormone therapy would reduce my risk of recurrence by 40-50% which is huge. But it's a huge reduction of a small number to an even smaller one of 3% versus quality of life being older and having lost time and opportunities we all aready lost because of covid.

PS Sorry for such a long post but I've seen several websites that say the OncotypeDX predicts benefit of radiation so a lot of readers might also have that misunderstanding. Once something incorrect is online, it tends to be reposted ad nauseum by other content-hungry sites. So caveat emptor as knowledge is power.

I just thought you said that doc said that Oncotype was predicated on assumed radiation, which is not correct. That's all. I must have misread.

You are exactly correct. He did say that. I read your question as asking of he got the estrogen positive criteria incorrect and he did get that criteria correct. Just added am assumption of his own that 'most people who have a lumpectomy also have radiation so the test must also assume that.' Or so I guess. But when I told that client service reps told me times he assumed incorrectly, his answer was 'well they don't know what they're talking about.' Even after I pointed out that one of them was the most senior manager, to whose office the president's office transferred me. The arrogance of the onco was inappropriate. One would think that the onco would at least double-check his facts with Oncotype unless his ego prevents that. As I note, the breast surgeon (who is the head of the whole breast cancer operation at this world-renowned institution) was dismayed and asked for a copy of Oncotype's letter for her files.as well. And thanked me for bringing it to her attention. I can only hope that other patients get the correct information going forward.