How Many are doing 10 years on Aromatase Inhibitors

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?

BCI test? Maybe I should know, but confused!

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

Perhaps that figure is based on participants who Did Not take tamoxifen or the AIs? It would be great to hear from Special K.

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.

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!

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.

Yup, it is

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....

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

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.

Thank you marijen

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.

bump

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.