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Aromatase Inhibitors: Did you decide to go on them or not?
Nanaloves: I’m about to start arimidex and just feel that the contraindications , bone issues etc. are overwhelming. I’m 70 years old, dodged a bullet I feel with zero stage DCIS but the follow up is pretty much no different then if it was more aggressive. I’ve just done 33 treatments of radiation and now they advise arimidex as a preventative. I’m not sure with the beginnings of arthritis and lower back. sensitivity already that I should take it. Anyone not take it and not have a recurrence within the 5 years.
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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. 🌸
@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.")
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2 ReactionsHi! 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?
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3 ReactionsI 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?
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.
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3 Reactions@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 didn't edit my comment fast enough so the final sentence doesn't make a lot of sense. I have a call into Oncotype and will talk with them and try to get some useful stats. But in theory, all other things being equal as the economists like to put it, grade 3 breast cancer OncotypeDX results would parallel the actual realized recurrence stats for the general breast cancer population offset or augmented by whatever mitigating factors (health, other genetics, lifestyle, access to proactive medical care, environmental factors, etc.) also come into play for each individual. Age plays a role as well.
For those wanting to do a deep dig on the OncotypeDX protocol, and the statistical universe it works off of, there are links on the parent company's (Exact Sciences) website.
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1 ReactionIt's not true that "30% of grade 3 (breast cancers) have low OncotypeDX score." I've asked the OncotypeDX customer support people if this is true as it's been posted several times on Mayo Connect and it's not an accurate.
I hadn't seen this study before and it's interesting. The aromatase inhibitors are still relatively new so maybe, over time, doctors will titrate dosing with some precision or even lower it. I was reluctant to knock out estrogen completely for several reasons so declined them. I also declined site-specific radiation and chemo wasn't suggested as I had the low OncotypeDX score. I'll never know if any of these decisions turn out to be 'wrong because I could have done any or all of them and still have a recurrence. The statistics for breast cancer treatments are all over the place and include statistics for damage or side effects from the various treatment paths as well. There are a lot of research studies looking at how to attack cancer successfully with less toxic or damaging tools. What we aren't seeing yet is science finding cancer prevention success though. Unfortunately.
I am no one year in on Anastrozole; minimal acceptable side effects mitigated by yoga, stretching and walking/hiking. My bones held with essentially no change and were good to start.
But a new thing has just emerged… diarrhea! Has anyone experienced this?
It could be completely unrelated but I need to consider all possibilities. Bacteria and parasites have been ruled out. I did all those tests. I have scheduled a colonoscopy a few months earlier than usual as well.