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

@callalloo it is the people at Genomic Health who told me this. I have also seen it in studies. I cannot explain why customer support is saying something different now. Maybe stats have changed. Just want to clarify my source- didn't make it up!

I think it is important, when we post, to say when we have DCIS even if invasive, when we are potentially influencing others.

I have to say that sounds like a lot of treatment for just a zero DCIS. I had a Lumpectomy for a small tumor, clear margins and no lymph node involvement, plus zero DCIS. I was told that I needed to have 'either radiation' or the 'Arimidex pill'. Nothing more than that, as I'm 79. At first it was 5 days of Radiation with no Boost, then that was changed to 10 days of radiation. I decided at that point to have the Pill instead. I read a report from a doctor to his patient that due to the side effects, she could take the Pill for three days a week and gradually bring the dose up and see how she felt. So, that's what I'm now doing. I think considering all the side effects (and remember some people have very little) it's good to 'introduce' the pill to your body in easy stages so it can get used to it? Instead of just going 'gang busters' with the whole dose immediately. I have the Mayo Clinic Breast Cancer book and here's what they say about radiation. On Page 172 it states 'In some women older than age 70, there's some question as to whether radiation therapy is of benefit. A clinical trial published in 2011 analyzed women older than age 70 who received a lumpectomy followed by radiation. The women who received the radiation had a reduced risk of cancer recurring in the same breast, but there was no difference in survival rates.' So, just to confuse you, there seems to be a lot of unanswered questions about breast cancer treatments. Blessings to you on your journey.

I wanted to do the BCI test but the docs did the CTS-5 calculator and I came back with a low number 2.55.
So they said since I was stage 1 grade 2 I didn’t need the BCI. I go off anastrozole at the end of my 5 years according to the calculator. Anastrozole has dropped my bone density.
Is anyone else familiar with the CT’s-5 calculator?

Hi! Yes, I am having similar issues! My bloodwork shows inflammation high CRP of 20. Stool testing ruled out parasites. Now I'm waiting on results to r/o celiac. I thought my gastrointestinal problems were from my BP med but maybe it is the AI?? 3 Other ladies in my local BC group also are having GI issues. This has been going on 2 months for me- how about you?

@omer I looked up the CTS-5 and it is based on two trials. From the website:
"The CTS5 tool was developed for the prediction of late distant recurrence for women diagnosed with ER–positive, primary breast cancer who are recurrence–free after 5 years of endocrine therapy. Data from two large clinical trials (ATAC and BIG1–98) were used to develop the CTS5."

Is this any different from other online sites like cancermath? I am not sure.

The BCI is a genomic test done on your actual pathology specimens. I had it before it was in the guidelines. I had a second opinion oncologist and printed out the paperwork and took it to them, because they seemed more open to new things.

It might reassure you to know that the CTS-5 is pretty darn close to my recurrence risk from the BCI. The difference is that the BCI told me that extended therapy was actually of no benefit. That was independent of risk since my risk was labelled "high" (they have since changed the labelling and it now matches the CTS-5 so I am "intermediate.")

3 months! Interesting.

I can tell you that 1/2 pill of Immodium every 3 days seems to keep it very well under control… Gastroenterologist suggested possible microscopic
Colitis as a possibility. I’m having a colonoscopy next week and will see; it’s the only way to test for it. If it’s not that ( or goddess forbid something else) then I’m thinking the AI might be the cause.

Thank you for responding. 🌸

How long have you been taking Arimidex?

Thank you for this info! This is very useful. I might still ask for the BCI.

Breastcancer.org incorrectly stated that the OncotypeDX test is used to predict whether radiation would be a benefit when, in fact, radiation is a variable that is not in any way considered or evaluated in the OncotypeDX model. The OncotypeDX is used to help oncologists and their patients decide whether chemo, or rather the risk and reward profile of chemo, would be of benefit. I have written breast cancer.org on several on occasions and as far as I know they still haven't corrected their text.

We have to make such serious decisions when we face breast cancer and few of us have the cancer-specifuc experience or education to do so. Yet alone do so dfairly quickly, That is why I think it's critical to get at least a second or third opinion with a with an oncologist. And, as with anything else that one reads online, double or triple check things because there are a lot of inaccuracies out there. And there's a lot of information that is simply no longer considered valid. The problem with online content is that there's relatively little original material and, for every bit of original material, there are hundreds or more websites immediately capturing that and adding it to their website.

So misinformation propagates exponentially. I think that there's no rest for the weary when it comes to due diligence on the part of the patient too try to become as well informed as possible.

Exact Science developed, owns, markets and processes the OncotypeDX test. Genomic Health has nothing to do with the OncotypeDX as far as I know. But at any rate, I again spoke with Exact Science yesterday and they will get back to me with the correct numbers but reconfirm that it is not true that "30% of people with a grade 3 breast cancer get a low OncotypeDX" score.

I would add the caveat that the word low is open to interpretation and I don't know what actual quantitative value Genomic Health would consider "low." My concern is that such a result would be so unusual that it would almost encourage an jnference that the OncotypeDX is a sloppy model and discountable or unreliable.

But imagine having a grade 3 cancer and an OncotypeDX test of the tumor sample showing a very low risk of recurrence. That would be welcome news for a lot of people if, and only if, the test's protocol and model have been thoroughly examined and critiqued and found to have integrity.