Question about AIs

Pat94 · 06-20-2015, 08:44 PM

I am 65 and have been in complete menopause 21 years. I have had both hips replaced previously due to bone deteriation.

My tumor discovered in Jan, 2013 was ER/PR negative & HER2+++, no lymph node involvement. Recurrence in Spring, 2014 found more than 20 positive lymph nodes, ER 5%, PR still negative, and still HER2+++. In addition to the surgery, I had 44 radiation treatments followed by TCH. I had severe side effects from the TC including blood clots. The 5th TC was reduced & the 6th had to be cancelled because they were worried I would die from SEs &/or have permanently, severely damaged vision. I finished the year of Herceptin at the end of May.

Now they have announced they want me on an AI, Letrozole. I know that AIs are most effective with high ER values and are of no or minimal value at low levels. I have been left with so many SEs from TCH I am not sure how much more battering I want my body to endure . Are there any studies showing the effectiveness of AIs on low level ER? I asked and was told my case is so "unique" that no studies fit my profile. They think I should try it & quit if I have any SEs. I haven't had a bone density scan yet but it is scheduled.

Thanks for knowledge, experience, and advice.

Debbie L. · 06-21-2015, 07:29 AM

Pat, I don't have any information to answer your (excellent) specific question about benefit from endocrine tx for very-low ER+ cancers. And as your providers say, I doubt we really know.

Have you thought about getting a second opinion at this time? Not just a consult but also a second opinion pathology review to confirm (or not) the actual ER status of the recurrence? You would want to do this, if possible, at an NCI-designated Comprehensive Cancer Center. Sometimes, you can just send your tissue blocks and do the rest (discussion) remotely. I did this with mine, sending them to Baylor where they did the Allred score (see signature). If you google "Allred Score", you'll can get information on that, and about its ability to sort out the "low" ER+ categories into clearly ER+ or ER-. Interestingly much of the research seems to be from India/Pakistan, although the test was developed by Craig Allred when he was at Baylor. Another thought might be to do an Oncotype DX and see what it thinks about the ER?

If you tried the AI and found it too troublesome to continue, it does seem that most of the SEs (except bone density decreases) are reversible upon stopping. I'm not certain, but I think issues are like deteriorating hips and knees are separate from osteoporosis issues (but of course, both can happen).

Good luck, and keep us posted about what you do, and what you decide, ok?

Debbie Laxague

michka · 06-21-2015, 07:43 AM

Hi Pat. I am sorry you had to suffer through bad SEs. I am surprised they are suggesting AIs with 5% ER and bone deterioration. AIs can generate SEs so I would ask for a second opinion.

Mtngrl · 06-21-2015, 12:21 PM

Hi Pat,

I was on an AI for five months three years ago, after I completed Taxol/Abraxane.

I was initially thought to be 10% ER+, but a later analysis of my lung mets said they are ER/PR-. Nevertheless, for no known reason, the question of AIs was raised again recently (though not by me.) The idea was discarded.

I had my most significant progression while on Herceptin and Arimidex. When I was diagnosed I was less than two years out from menopause. I didn't have really severe side effects, but the ones I had I didn't like (though, to be honest, I no longer remember what they were.) I'm back to feeling "normal," or as normal as a "heavily treated" metastatic breast cancer patient can be (which is actually pretty normal, believe it or not.)

I think Debbie's suggestions are good ones.

Becky · 06-21-2015, 12:57 PM

Debbie said exactly what I was going to say. I had my tumor sent to Sloan Kettering and sure enough, the results were different than that of the local hospital. Not drastically different but different. Alittle higher grade and less hormone positive than in my signature (30% ER + versus 50% ER positive) I did go on an AI because at that time, I was in my early 40'S, got my ovaries removed to do so. I had kids at home still and wanted to give it my best shot. There are some interesting studies about us gals who are less than 50% ER positive but PR negative. The bottom line of theses studies is that it is believed that most of us are negative generally or rather our tumors behave as being negative. Some women with lets say, 90% ER+, probably have tumors that are but believe it or not, some of those women have tumors that behave as if they are negative.

Have a big well know cancer center analyze your tumor and see what they say the pathology is. Otherwise you could trial an AI and see how you do. We are here for you.