How Many are doing 10 years on Aromatase Inhibitors
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It seems to me that five years or ten years is arbitrary. I mean why not just stay on it until you die? All they know, and it's not even certain, is in most cases it holds off recurrence while you're on it. So taking for five years does not give you " immunity ". Does this make sense. Also length of time depends on age as well doesn't it? The older you are the less chance you'll get a recurrece before you die? They don't even know how quickly a recurrence would happen or even if it would happen on an individual basis. I am hoping for a better option coming down the pike. The only thing that makes sense to me is stay on it until you can't - the reasons for going off are many. Or stay on it at a reduced dose. Comments?
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There is also the issue of developing resistance to AI resulting from cancer mutation. If research shows a significant number of people on AI develop such resistance after X number of years - I see no point to continue beyond the X number of years. It seems to me there isn't enough data yet to make such conclusions. They did confirm however, that staying on AI for 10 years makes sense statistically for the right group of patients.
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BCI test? Maybe I should know, but confused!
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pupmom - couldn't tell from your post -are you asking what BCI is, or suggesting that is the way to decide?
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Ah, I'm not sure I could handle being high risk/low benefit. WTH kind of answer is that?
When I started almost 5 years ago, I had hoped we'd be a little further along by now. So frustrating that we still don't know that much about AI's or how to treat hormone sensitive bc. And that doesn't even include the question of whether or not there are differences with subtypes (IDC vs. ILC).
Another thing that really frustrates me is that when I was first dx, I was told that having ER/PR+ is a good thing. It wasn't until later that I found out that about 1/2 of all cases relapse after 5 years. (Correction: half of all HR+ recurrences typically happen after 5 years of AI therapy). Yikes! I'm thinking hard about this decision and will be waiting on pins and needles for my test results. So.....how reliable is the test? That's what worries me most and if I come back as high risk, I believe I'll be seeing my therapist on an ongoing basis.
It seems gene testing is still 'bleeding edge' technology.
Thanks for letting me vent!
Hugs,
~M
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Wow bc101. Where did you find that little tidbit about 50% recurrence? I would really like to see it and bring it to my MO next time. Thanks for your post. Yes SO MUCH for cutting edge technology, we are in the infant stages of cancer treatment. IMHO
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Perhaps that figure is based on participants who Did Not take tamoxifen or the AIs? It would be great to hear from Special K.
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I believe I lifted it from the intro here.....
Review Article | August 10, 2012 | Oncology Journal, Breast Cancer
By Elgene Lim, MBBS, FRACP, PhD, Otto Metzger-filho, MD, and Eric P. Winer, MD
Reviews
Hormone Receptor–Positive Breast Cancer: The Known and the Unknown
Approximately 70% of human breast tumors express hormone receptors (HRs), comprising the estrogen receptor (ER) and/or progesterone receptor (PR). The ER is the primary transcription factor driving oncogenesis in HR-positive (HR+) breast cancers; it is both a target of, and predictor of response to, anti-estrogen therapy. Unlike in other breast cancer subtypes, more than half of all disease recurrences in HR+ breast cancer occur 6 years or more after diagnosis, particularly following 5 years of adjuvant anti-estrogen therapy.
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It sounds like a very high percentage to me. I don't know if they're referring to women treated with tamoxifen or what. I didn't delve into all the details of the study, so I could be reading it wrong.
Please tell me I"m reading it wrong!
~M
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Bc101 - I misread your post to mean that half of all BC patients relapse after 5 years. It actually is saying that half of all recurrences happen after 5 years. It's my hope that the AIs will give us more time to find a cure before we relapse, or at least better treatments that are not available today.0
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bc101 - 10% of BCI testers fall into the high recurrence/low benefit result. It is problematic from a planning standpoint, but my onc feels like low benefit doesn't mean zero benefit, so his recommendation is to continue if I can. Perhaps strangely, I am motivated to continue with anti-hormonals, even in the face of a potential low benefit, having remained NED so far despite being 96% ER+. I will never know if my tumor was fueled by estrogen, or Her2+, or both - so I will continue maintaining the status quo. I think your 50% recurrence rate figure is high, I believe it is more like 30%, but keep in mind that "early stage" term encompasses up to stage 3A, with risk across that spectrum. While genomic testing is still a young field, I have faith in it - I did both Mammaprint and BCI, and both results align with my clinical profile. I think it's good to remember how many have been spared from needing chemo, or the question about whether it is warranted has been answered by this type of testing
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Grandma,
Oh yes - thanks for pointing that out. Big difference in meaning! I obviously have hormone brain, lol!
BTW - I see we have a lot in common. ILC same side, stage 2, multi focal, grade 2, tumor size was at least 5 cm - maybe bigger. My Oncotype was 10, too.
There's some good news in that!0 -
Wrong info posted in error. Deleted
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marijen - don't know if you're comment involves my post, but to clarify - stats indicate30% of all breast cancers in stages 0-3A will recur - not just hormone positives, and not falling into any particular time period.
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Ok, I misunderstood. Then 30% will recur, stage 0-3A, no time frame. Geez to me that sounds like an awful lot.
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Yup, it is
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Agreed. No matter how you slice it, these numbers are unacceptable.
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My onc says if I continue for an additional five years it gives me a 2 percent benefit. And then he added that bone and heart side effects need to be taken into consideration and that he is comfortable with whatever I decide. I have the pills, just haven't restarted them yet. He isn't a fan of the Breast Cancer Index test yet, so I haven't had that, but he is retiring for medical reasons so I am saving it for my next oncologist.
what to do, what to do....
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I see my onc next week, and I passed the five-year letrozole anniversary in July. I don't believe I'll qualify for the BCI--I had six involved nodes, and I think you have to be N0 or N1 for the test to be valid. I suppose that means buckle up for another five years.
I'm doing pretty well on the letrozole. Some stiffness and swelling in my hands, my cholesterol numbers skyrocketed, but that's about it. I'll swallow that little gold pill every night for the rest of my life if it will keep any sleeping lurkers asleep.
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Hi everyone - I'm posting a link to an article I'd read on Medscape then lost the link and found it again today. It's a discussion about staying on AI's for an additional 5 years with nothing most of you don't already know, but the reason I'm posting it is so you can read one of the comments from a nurse who really lays it on the line about side effects and another from a psychologist who sees women suffering from vulvovaginal atrophy, an SE never mentioned in these research articles. Enjoy: http://www.medscape.com/viewarticle/868551#vp_1
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Thanks for posting but I find it very unenjoyable. In fact I think it will give me nightmares. But here is the actual study link
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC20012...
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Marjen, I clicked on the link but I have to be a member and it looks like it is for doc's only. Do you have any suggestions? It looks like a great article from what you have said.
Thank you.
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Medscape you have to sign up. I signed up a long time ago. Go to join now. Just check consumer/other. It's a great medical website. It's worth the trouble, all the latest medical news
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Thank you marijen
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So I hear about risk (bone and heart) for staying on AIs. What exactly is the heart risk? Myopathy? Valve problems? Atrial Fibrillation? Something else? And if you know, what would be the mechanism for that?
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There are already studies that have been posted and discussed. You might find them at the AI topics or the Femara topics. It's way too much to post again. There are associated heart problems, eye problems, lung, brain, etc. These are all related to the decrease in estrogen. Great post by Chisandy at page 295 I think at Femara, and I posted Estrogen decrease problems somewhere! I can't remember. But you can find plenty if you do a search. I wish there was some way to consolidate all the closely related topics... but not possible because of discussions.
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Thanks Marijen!
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bump
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Hi marijen,
Why do you have so much interest in this thread? Based on your recent posts on other threads you are not on AI, have not taken AIs in the past and apparently, do not have locally advanced diagnosis like many women who are recommended to stay on aromatase inhibitors for more than five years.
We who have been on AIs for a number of years, are well familiar with the side effects and had more than one conversations about them with our oncologists. For us it is a very delicate balancing act, what is it for you?
Best to all.
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I was on femara for about 6 years when my onc told me I was "probably" safe to stop it due to my BC only being weakly positive (I think it was 10% positive) but I was too scared to stop! I finally stopped taking it when I hit the 7 year mark. I just finally decided that that was IT for me. All the joint issues, the osteopenia, the vaginal atrophy and unenjoyable sex was really getting to me. I did get some relief once off of it, but I wouldn't say a huge amount of relief. Maybe a 20 percent improvement at best. It scares me all the time that maybe I quit too early and should still be taking it. Sigh.
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I just started Year 6 - about mid-way through the 5 years my MO told me expect to be on the AIs for 10 or more years due to my high risk.
Just had a DEXA scan and my bones were still normal - I am so grateful.
My joint pain has lessened dramatically after about year 2.5.
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