How Many are doing 10 years on Aromatase Inhibitors
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Ruthbru,
My oncologist says the same. Onward and upward.
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My oncologist, who okayed being done after 5 years, moved & so I asked my new guy at my appointment in April, and he said the same thing.....unless you are at a higher than usual risk of recurrence, after 5 years the risk of serious SEs start to outweigh the possible benefits. Of course, everyone has different risk factors & there is not one 'right' answer that will fit everyone....just wanted to point out that the ASCO recommendation for Als still remains at 5 years (the title in the 'Breaking News' is very misleading IMO).
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MsPharoah the reason why they are not saying 10 years of AIs is because the study results are not in yet… but it probably will say 10 is better. So since the study isn't out they say women who have been on an AI can go 5 more on Tamoxifen because we know that additional time on Tamoxifen is beneficial.
But my onc is pretty confident that she's going to be telling me that I should do 5 more years of AI when the time comes. She wouldn't recommend it now because the studies aren't published but I can tell she is so ready to jump on this band wagon. My onc feels I am high risk of recurrence due to my tumor size in spite of no nodes. I told her I thought I was at moderate risk… she had no comment.
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Thanks ladies for your continued contributions and, yes no doubt that is why my Onc has suggested I stay on it, heading towards 7 years, as I am at higher recurrence risk because of positive node.
Ched
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Yes, Ruth!! My onc said the same things that you are saying! If I'd not had the positive node and the high grade, I would have stopped the aromasin at 5 years!! But, she was very honest with me and said, we still don't know the true benefits of staying on it for 10 years!!
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I started taking tamoxifen almost a year ago...I was feeling so tired and all my joints hurt I had awful hot flashes..I stopped taking it 2 weeks ago because I have a surgery in 2 days and I feel so much better...any of you feel the same...? How are the second effects of aromasin or the other inhibitors?
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I had more problems wit tamoxifen than I have with arimidex.
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I did 3 years on Anasterozole. This 3rd year became tough especially because of back/shoulder pain and emotional changes. I've been on generic Aromasin for a week and I think this is much much better so far. Just some heartburn.
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Hi coqui. The SE's hit each of us differently regardless of which you are on. Just have to find the one most tolerable to keep the beast at bay. Good luck with your surgery. Let us know how you make out.
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My MO said I should consider 10 because I was stage IIIA, I'm at 3 1/2 now, SEs suck, so I'll see how long I can tolerate it.
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My MO is recommending 10 years as well.
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I was dx over 6 years ago.........grade 3 with nodes involved.............chemo etc etc followed by letrozole.............I'm still here, although I really didn't think I would be! Life is good.............
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Cindy and Ched, I have a similar diagnosis to your diagnosis and my onc is suggesting staying on AIs for 10 years. I have only 3 more to go.
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Is it because of being Stage ll that ten years is the recommendation...
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think it is partly the reason, I was stage 0 and docs have said I could end at 5
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August, I was stage II also with no nodes also & my oncologist had me quit at 5. With your low Oncotype and other favorable stats, I would definitely be asking more questions before agreeing to stay on longer.
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ruthbru, have you had a chance to read the information from the European studies? I was 100% ER positive which according to the European studies means a higher risk of recurrence. Also, anyway that I can keep from going to Stage 4, I will try. Just saw a DCIS diagnosis 2007 who is now Stage 4. She stopped her Tamoxifen after 2 years. Although no one can say who will or will not go to Stage 4, I believe we have the right to have all of the information available to make a good decision.
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Absolutely; and as you point out, you need to take your own personal statistics into account when making decisions.
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I am 98% er+. - nodes, grade 1 stage1. I have done 3 years of arimidex. my mo recommends 5 then "we'll see" I'm stopping it for 3 months to see how much QOL improves. This is NOT recommended. I was told "we'll see about 10 years, when you finish 5"
I was told last appointment chance of recurrence in 10 years without AI's 20%. With 8%. ( taking them for 5 years, and of course there are no studies regarding outcome after taking them for 3)
We'll see.
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bedo...my physician initially told me 10 years....he also said my risk with and without was similar to what your physician told you... He thought "single" digits with 10 years. Nothing written in stone. QOL is an important factor. My only issue has been uterine polyps..which incidentally I had before I started this journey. My physicians thought after my switch from Tamoxifen to Letrozole, I'd improve. But so far, after two years of Letrozole, it's business as usual in that department. So at least I know endocrine therapy hasn't been causing my problem.
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My onc told me it doesn't matter what your percentage is. "It doesn't work that way." Granted I think she was really pushing me to not only stay on an AI but preparing me for 10 years. I was 30%ER and 5%PR.
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I was only mildly estrogen positive (if I remember correctly 11-25% range) & PR negative, so that made my decision to be done after 5 years pretty easy.
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So the more ER+ we are, the longer we should take them? I was >95%ER+ and >60%PR+...still may only do 5 years since I had DCIS. The MO said that if I was not so highly positive, she would not even recommend an AI but since I was so high, she said it would provide some protection and she strongly recommended I do 5 years.
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The biggest chance of recurrence is in the first 5 years, then it drops way off, but of course, never goes down to zero, which is why you have to weigh all your own individual factors. Right now studies are not complete on the Als, but some women who are at high risk are being recommended to stay on them anyway because of the Tamoxifin studies. I wouldn't think that more than 5 years would be recommended for DCIS.
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april485 my MO claims percentage doesn't matter… or as she said doesn't work that way. I would be interested in what your MO says because I'm not buying it. Maybe if she did give me an explaination of how it works but she didn't.
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Don't you get the feeling that when doctors say that they are 'practicing medicine', that is exactly what they are doing.....practicing.....
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Oh I've had many discussion on this with a local gal I met here. We have the same BS, different MO but same place. I think she's more annoyed with the AIs than I am. Wondering if it's Voodoo
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Doxie my oncologist tells tells me just five years on exemestane and oncodx is 34.
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Yes, Ruth, totally agree!! I look at my little white pill every morning, and think to myself:such a tiny pill with so many powerful side effects!!
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hi, Lago!! How are you doing with the aromasin?
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