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

I would also like to see those studies. I was on letrezole for only 4 months after a bilateral mastectomy for invasive lobular carcinoma, er+, pr+, Her2- , grade II, stage 1A, before I developed very painful carpal tunnel symptoms with trigger thumbs on both hands and body aches everywhere, that kept me from sleeping. And brain fog with some depression thrown in. My oncologist suggested a break. I don't know for how long. I have been off the drug for two weeks and the body aches are better. Depression and brain fog is better, but the carpal tunnel and trigger thumbs have not resolved. I have tried physical therapy and ibuprophen. It's very difficult to think of going back on AI's. I am 69.

It looks clear to me if I'm interpreting it correctly. I understand the sentence to indicate (correctly) that the OncotypeDX isn't considered useful in selecting the "kind" of chemo plan for those whom it considered would benefit from chemo. Since the OncotypeDX has zero to do with recommending any chemo prescription, the lack of consensus is appropriate though I'd rather the doctors agreed 100% that 'the type of chemo' isn't even being tested.

The people at Oncotype told me that they're still (after much doctor education efforts) hearing of physicians who have their patients take the OncotypeDX to make radiation selections, which the test is also not designed for.
[And, as noted in earlier posts, breastcancer.org is, incorrectly, reporting that the test determines whether one should have radiation. ]

So patients unfortunately just need to be very proactive, as most of us thankfully are here, in evaluationg information and data to get the valuable meaning out of it.

And I would be very concerned if my oncologists relied totally on the OncotypeDX either. Identifying and treating cancer is a process over time, starting with gathering quality data, making the best decisions at the time and changing course along the way as needed by results, newer/better meds, etc. The first critical information, to me, would be the post-surgical biopsy, signed off on by two pathologists I hope, that describes the mess of cells and their behavior. With hopefully wide-enough clean margins. Any two data points that seem to be in conflict would, for me, trigger retesting. Any doctor, lab or lab tech can make a mistake, mislabel a sample, have a bad day and pay insufficient attention to protocols, etc. So I hope that doctors are not relying solely on any one data point.

I sometimes think of the patient's responsibility for self-guardianship as the old adage of 'no rest for the weary' but it is what is is and can save a life.

In my case there was a dramatic difference between post-surgery pathology (grade 3, LVI, high ki67%) and Oncotype (low).

As for relying on lab technicians, well, one lab had me as HER2+, one had me as HER2 equivocal and one retested and got a negative- actually 4 different hospitals' labs.

If I had stayed with the first hospital I would have had chemo and been treated for HER2.

I asked for retests at three different oncology offices, and the tumor board also refused. The fourth doctor retested HER2 using 60 cells instead of 20. Ductal cells were positive but HER2- dominated so no Herceptin.

That 4th doctor also retested Oncotype and told me I could choose chemo if I wanted to. It was up to me. All the other oncos, two at major world class hospitals, relied entirely on the Oncotype.

Wow, I don't like that the labs got different results. I'm not totally surprised but it is disturbing. Kudos for your persistence and the help you provide to others here who might be at the beginning of this unintended journey,

I can only say that the breast cancer 'industry' uses 50% as the presumed reduction of risk of recurrence of ER+ breast cancer if one takes either anti-hormone therapy for five years. The two oncologists whom I consulted say that the number is closer to 42-45%.

Your cancer issue might have very different statistics if a less common cancer. I calculated my decision about aromatase inhibitors by having the OncotypeDX test done with the tumor tissue. The test yielded a 3% risk of loco-regional 'recurrence at 9 years' if I took aromatase inhibitors. Arithmetical, that means my theoretical risk is approximately 5% if I didn't take them. [Chemo was ruled out as having x<1% risk/reward benefit and therefore not recommended.]

If you can get the genetic testing done, the data might help develop a plan of action. I saw my oncologist (first of two and still the main one) two weeks after surgery and he recommended the OncotypeDX at that time so it's possible to have a time lag between post-surgical biopsy and tissue submission to Oncotype.

I decided against the aromatase inhibitors because of the only-slight risk in reduction but everyone has a personal risk/reward level of comfort to consider. A high risk result would have made a different decision tree to ponder. Gene-testing for breast cancer issues is mentioned several times on other Mayo Connect threads so you can read about choices out there.

Also, grade is subjective, according to my doc. I had results that read grade 2 at two hospitals, and grade 3 at another two.

There are other factors that make things complicated. My cancer is mixed ductal and lobular: the ductal part is HER2+. The HER2+ result from the biopsy probably meant the biopsy mainly got DCIS and ductal cells, but the surgical pathology got mixed ductal and lobular, so it was equivocal overall for HER2, until more testing showed a negative result because more cells were tested.

Lobular always has a score of 3 for tubular in the calculation of grade, which presumably increases my grade, since my tumor was half lobular.

The highish ki67% could be from cells healing after the biopsy (proliferation), and one doc agreed. I also wonder if the LVI is from the biopsy, meaning it could appear some cancer cells ended up in the lymph vessels (they were not in blood vessels) though doc said no recently when I asked.

I mainly questioned these things because of the disparate results but also to explain my low Oncotype. It would be nice to trust every result as an absolute truth and I don't mean to upset anyone!

In the end, the treatment recommendations did not change after the first post-mastectomy pathology. The first HER2+ result was from the biopsy so that mistake would not have persisted. While the three post mastectomy lab results were a little different, my treatment remained "just" letrozole, based on the Oncotype which we also have to trust! Getting opinions and pursuing extra tests just let me feel more comfortable but didn't actually change anything.

I made it through the aches and pains for 4.8 years and then got slammed. I don’t know why. I am your age and had a cortisone shot near my thumb/wrist since the hand doctor said it was tendinitis not carpal tunnel. It worked but now I have Achilles tendinitis (same side) and can barely walk. Not sure what I am going to do this time. I think the AI dried up everything! But I am glad I made it most of the way through. Yoga is helping a lot. I was lucky to try the hand doctor because my husband has been his patient or I never would have thought of that. Other people have tried different AI’s. My son’s mother in law switched to tamoxifen which is not without risk, so I would explore the options. Try not to give up.

I kept googling different sites. There are some in India that have great results. The drugs, All AIs, crippled me. I stopped after 6 months and I am still having problems. They caused me severe arthritis and weight gain, dizziness, severe mood swings, it was horrible. I was in bed the whole time, not able to walk. It took me 4 months to get those horrible side effects out of my body. I am 3 years cancer free, doing my 6 month checkups, and I have never felt better. I have lost 56 pounds and I walk 2 miles every day. I did it all by going whole food, plant based, no oils, and I am living my BEST life. I am 69 this year, and looking forward to many more good years. I dont have the sites anymore, but I remember the numbers being in the low 1 to 2 percents.....

@toepeekun, you'll notice that I moved your post about deciding whether or not to take an aromotase inhibitor or not to this existing discussion:
- Aromatase Inhibitors: Did you decide to go on them or not? https://connect.mayoclinic.org/discussion/arimidex/

I did this so you can easily connect with others who have through this decision process. Keep in mind that everyone is different. What may cause side effects in one person, may not in another. You're right to consider carefully with your oncologist your own health history, age, your diagnosis, goals of treatment, and your specific risk of recurrence.

Have you discussed the percentage risk of recurrence specific to you with your oncologist?

Hello all! I’m 63 was diagnosed in august 21. Dcis stage zero grade2 and no lymph nodes. No history of breast cancer in family.
Tried anastrozole and couldn’t tolerate it ! After two months went off it! My mayo oncologist put me on tamoxifen 10 mg to start. Anyone - please share your experience with me on tamoxifen or other meds. It’s all so overwhelming. I did have some slight spotting and cramping in the fist few weeks so far on tamoxifen. But dr said after ultrasound that I was ok. God bless all of you - survivors!!!!!