Triple Positive - AI more than 5 yrs?

Mommato3 · March 2020

HI,

April will be six years since I was diagnosed. I took Tamoxifen for four months until my periods came back. My MO switched me to Zoladex and Anastrozole. I ended up getting an ooph later that year. My MO told me last August that if it were her she wouldn't take Anastrozole beyond five years. The first three years were fairly easy. The side effects would come and go. Then I developed severe tendonitis in my left wrist (disappeared when I changed manufacturers), pain in my knees (still comes and goes) and in the last year plantar fasciitis in my left foot that I've had several times. I also went from having healthy bones to osteopenia relatively quickly. The weight gain is the worst part for me. I've read the studies. 5 yrs, then 10 yrs was best, now 7 yrs is just as good although not everybody needs to go beyond 5. It's so confusing!

41 at diagnosis, 90% ER/PR and highly Her2+

rozem · March 2020

hi there

highly her2 here ! my MO advised at my last meeting that I could stop at 7...I made it to almost 8 and stopped last October

she said due to my stats (exactly like yours) the evidence does not support going over 7 years for her2 grade 3 no nodes (actually 5 years is what she said but add 2 for good measure!)

I felt comfortable stopping at 7.5 almost 8 years

ElaineTherese · March 2020

I just had this conversation with my oncologist! I'm on year five now. She says we'll go to seven if no new study surfaces, suggesting longer. She notes that oncologists keep shifting their recommendations as new studies emerge, so we'll wait to see what's the latest as I approach year seven. Though my cancer was 95% ER/PR positive, MO claims that its rapid growth was driven more by the HER2 protein than by the hormones.

Salamandra · March 2020

Can you ask if you are eligible for the Breast Cancer Index test to predict the helpfulness of endocrine treatment beyond 5 years?

ElaineTherese · March 2020

The Breast Cancer Index test is generally used for HER2- patients, and this is a thread for triple positives.

Mommato3 · March 2020

Salamandra, The BCI test would require my original tumor which I'm not sure they still have it? It's been almost 6 years. Besides, we are on an HSA so insurance would require me to pay my deductible first.

rozem, you have been on Tamoxifen for 7.5 years, right? I wonder if MOs treat Tamoxifen and AIs different. High Five for that long on Tamoxifen. I started on that first for 4 months and the side effects didn't seem too bad. I tried it again last fall for about 8 weeks and I seriously thought I was going to strangle my hubby, kiddos or myself most days. The mood swings, insomnia and hot flashes 6-8 times an hour were overwhelming. I quit and went back to Anastrozole.

ElaineTherese, Things keep changing all the time. I remember when the study first came out that said 10 yrs was much better than 5 yrs. A lot of MOs jumped on that and started telling their patients to expect 10 yrs. Then the study came out and said 7 yrs was just as good as 10 yrs so the recommendations changed again. Now MOs seem to even be backing off that recommendation for some women. Our time lines are pretty similar. We even had the same treatment.

I just wish I knew where I stood. My tumor was highly Her2+ and very fast growing and that seems to be what she is focused on. In her opinion, the women that have recurrences 10, 15 or 20 years down the road are ones that had low grade, slow growing tumors. I have had more than one MOs that has made that comment. The downside is that I was younger, 41, at diagnosis. That definitely made a couple of them pause on the AI debate. I'm just ready to be done. And yet scared to stop.

Tess111 · March 2020

The data on Triple Positives and extended use of AI's is pretty scarce. Do we follow the recommendations for our Her2- sisters or does our Her2+ status change things?

There was an abstract on this topic presented at the 2018 SABCS. Here is the link to the abstract Incidence of Late Relapses in Patients With HER2-Positive Breast Cancer Receiving Adjuvant Trastuzumab: Combined Analysis of NCCTG N9831 (Alliance) and NRG Oncology/NSABP B-31. Unfortunately, it only covers up to 10 years because Trastuzumab hasn't been part of the protocol long enough to enable a longer evaluation. I am not sure if this will help or just make things more difficult for you to decide, but I thought I would pass it along.

I also have a PDF of the full paper on the study. If you or anyone else would like to have it, just PM me with your email address and I will attach a copy for you.

My SE's on letrozole make me miserable, and I will have been on it for 3 years next month. At each 6 month anniversary, I tell myself that I can do at least another six months, but it is a struggle. On the other hand, my annual mammogram is next month and I am praying for a clean bill of health. If staying on letrozole gets me that, I feel it is worth it.

Mommato3 · March 2020

Thanks for the article Tess111. Based on that article, HR+/Her2+ has very low recurrence rates in years 5-10. That's comforting to know. Still not sure if I can actually make myself quit at 5 yrs.

rozem · March 2020

mommato3 yes I was on tan that long...it was manageable. The SE on an AI were way worse for me. I’m dealing with a lot of uterine issues still so those were my biggest issues being on tam

I’m glad this thread started and I hope her2 ladies chime in as there are few studies, as mentioned? On us triple positives

JoniB · March 2020

Next month marks four year on Arimidex for me. When I started I thought I would be on it for 10 years, based on what I was reading on this site, but my MO said 5 years. I'm due to see him next month, unless that gets pushed back due to the virus, and I'll ask him again then.

Triple Positive - AI more than 5 yrs?

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