How Many are doing 10 years on Aromatase Inhibitors
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Originally the problem in analyzing the complexity had a lot to do with issues of permission and confidentiality in being able to backwards verify characteristics of any given person when doing a massive collection of data of all types for comparisons. There also was the problem of careful tracking humans and their results, since humans are now so mobile in their lifetime, and some like to leave their cancer and treatment behind -- in part because of questions about whether the information could potentially affect their job or their insurance, etc.
I don't know where those issues actually stand now. But IMHO, until such a large enough database exists that is individually verifiable (so that no one can twist the data or the results), there won't be any effective way to have accurate information for deciding the best treatment or prevention for complicated characteristics, no matter how sophisticated the testing becomes that actually is developed.
A.A.
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Jeez I hope I can make it to 2 yrs minimum, then maybe 5! Ten seems rough. Btw I am planning to start Lexapro after suffering with anxiety and some depression for 8 mos- exactly the time I've been on AIs. However, now at least my aches and pains fluctuate vs bother and wake me every night.that is an improvement.
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Now seeing this website finally discussing 10 years on Tamoxifen. My onc believes that continuing the AIs is a great idea. I am continuing. Hope this opens up the discussion.
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I think they are just guessing at this point. No studies are completed on Als, which work in a different way than tamoxifin. I don't think it is a 'one size fits all' thing. Everyone has to look at their own personal statistics/recurrence risk/other health conditions/severity of SEs etc. before deciding what to do. Sigh!
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Well, what are others doing?
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The oncologists of people I know are either waiting for more information, or allowing higher stage ladies to stay on for now as a 'we don't know but it might be worth the gamble' type of thing. I would guess that for stage I, most of them would say no, for now anyway.
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An English clinical trial, ATTOM, was released two weeks ago and the results mirror the ATLAS trial that was released last December. It appears that between years 5-9, there isn't much difference between those who continue taking Tamoxifen vs those who don't. However, after ten years, the patients who had continued taking Tamoxifen for ten years, appear to have a 25% lower mortality than those who just took it for five years. Regarding side effects, like ATLAS there was a small increase in the number of deaths from endometrial cancer, but many more lives saved from a breast cancer mortality.
The bottom line is that patients now have a choice whether or not to continue taking Tamoxifen.
With respect to AI's ... We are STILL waiting for more trial results....
I have to most humbly disagree with Ruth with respect to who is more likely to continue treatment. I was diagnosed prior to the release of these studies and with a non-aggressive tumor, my MO told me to consider endocrine therapy for ten years.
Since we don't know how aggressive or non-aggressive the patients' tumors were in the studies, it's difficult to say exactly how much absolute benefit vs relative benefit a patient actually receives.
Hopefully in the near future, clinical trials will reflect genetic testing and we will have a better way to pinpoint therapies.0 -
VR ~ when you are saying that those who took it for 10 years have a 25% lower mortality...do you know the real benefit?
(i.e. 86% of the people who took it for 10 years are still alive vs. 84% for the 5 year group.)
I just don't want anyone to read that and think that if they continue another 5 years that the absolute benefit of not dying is 25% when in reality it is more around say 2%.
I just can't see how a 2 or 3% benefit is significant enough to continue this medication for FIVE more years for some. There are so many other things that can lower your risks that don't have the real and harmful SE's. I just don't think this information is convincing enough for lower stages.
Although I completely agree that it is an improvement that we are being offered more choices..I just wonder if many women will be overtreating out of fear.
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Susan... Note that I mentioned relative vs absolute benefit. That's why patients need to discuss with their physicians their own personal statistics. Patients need to educate themselves how to interpret these studies and what they mean to them.
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voraciousreader I agree with you. I read here* that the study was surprised the those who recurred in the long distant future tended to be a lower grade. When you think about it, it makes sense. The slow growers are either sleeping are so slow growing that they don't seem to cause a problem for many years. While the fast growing cancers will grow so much faster their negative effects on the body will be felt sooner.
*note this article is 5 years old and references a study, published in the Journal of the National Cancer Institute, treated at M.D. Anderson between 1985 and 2001.. Not sure what the newer studies say.
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Well, it is as clear as mud isn't it? Argh!!!!
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Yup. Lets face it they really don't know what's going on
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This is a fine example of what Eric Topol, MD describes in his visionary book, The Creative Destruction of Medicine. He says that current clinical trials cost too much, take too long to conduct and don't give patients and physicians enough information to treat properly. That's why he invisions a future where there will be shorter studies based on genetics that will tell us EXACTLY who benefits from treatments, who will likely get side effects from treatments AND who will NOT benefit at all. So, for example, if in the ATLAS or ATTOM trial, the researchers knew the Oncotype DX scores of the patients when the trial began, then patients like myself could judge how much or how little benefit one could receive from the treatment.
For sure, we are slowly moving in that direction. Today, there is a genetic test to tell us how well cardiac patients can metabolize Plavix. We know from the Oncotype DX test who would benefit most from chemotherapy. Hopefully, one day soon, we will see more clinical trials that are genetic based and then there will be less guess work and less statistics involved....and patients will receive more individualized treatment.
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I sure hope so....and also I think all the lifestyle components should be taken into consideration when compiling statistics. Keeping a proper body weight, cutting way back on alcohol, exercising religiously all lower estrogen production & reduce recurrence risk. So I would like to see studies with those types of things factored in as well......kind of like many Type 2 diabetics who can cut back on their medication, or go off completely, if they make the needed lifestyle changes.....
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Ruth....I have always lived a healthy active lifestyle. My sister is morbidly obese, has controlled hypertension and has a host of other illnesses. Guess who is the only female in both sides of our family to get breast cancer? When I was diagnosed and given a list of do's and don'ts, I looked up at my physician and asked, "Exactly what else should I be doing? He had no reply. Rather, he just took the sheet of paper away from me and threw it in the garbage....
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I hear you.....everybody else in my family is overweight, inactive, drinks too much, and has cholestroel and heart problems. Right after I was diagnosed, I remember throwing a shoe at the TV when some report came out about exercise reduces the chance of BC, and I remember after a chemo treatment, wanting ram the car next to me at a stop sign. It was being driven by a huge lady with a cheeseburger in one hand, a cigerette in the other and, no doubt, a beer between her knees!!!!
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ruthbru I'm still waiting for them to start studying stress. I feel that was my final trigger and continue to blame that asshole boss I worked for (15 months). My BS said my cancer started about 4 years prior to diagnosis which would have been about 12-15 months after I was working for that asshole.
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Interesting lago....but I will never know, and quite frankly, I am much more concerned with the life ahead. However, I am wishing someone in my past life the most miserable of menopauses. I think fitting, as not harmful, but high on the unpleasantness scale.
I am in the throes of ecstasies from a fabulous dinner of fresh rockfish, salad, asparagus, and local strawberries. I may never recover.
Good night. I did skip a run tonight as butt and other areas are in need of rest.
And to top it all off, a glorious sunset over the Olympic Mountains. - Claire
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Claire I find those assholes are already miserable. No need to wish them anything.
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I did 2 1/2 years on Tamoxifen and was recently switched to Femara when officially declared menopausal, or as I so fondly call it, "all dried up." My onc said he had no problem with me doing 5 years on Femara. Since I was extremely ER+ and PR+, if all goes well, I'll ask for more time on AIs. The impression I get is that he would prefer only 5 years on any given drug, so maybe he'll be open to moving me to one of the other AIs after the 5 years on Femara. I wouldn't mind being on AIs the rest of my life -- anybody know if there are any clinical trials I could sign up for to do this?
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Do you think how ER positive you are affects the AI need/etc? Like I was 30% ER positive...is that low?
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Lisa I was 30% ER+ 5% PR+ but my onc's nurse says it's the size of my tumor she is concerned about. I was also told you can't be "a little bit pregnant" when it comes to ER+/PR+. I mean if 30% of your tumor was ER+ that 30% can give you mets if left alone to do what it wants.
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Hmm, good info. I guess they believe strongly in the advantages of starving possible tumors (and the rest of our poor bodies) of any estrogen period. My tumor was less than 1 cm- (it was 8mm) but still. I spent a lot of time confused because i thought the small size meant I had just a light case of cancer
but eventually understood that cancer is cancer. My onc said it being smaller and not in nodes made it more likely that i would have a "better outcome.' OK!
I think I am going to try glucosamine. Do we still get it with chorondoitin or whatever that was years ago? Anyone have an idea about the therapeutic dose etc? thanks!0 -
My onc said the same thing about low ER+ (mine is just 10%ER+) as Lago. ER+ is ER+ no matter what the percentage. She said we don't know which part or which cells would decide to turn back on...
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I went to a lecture years ago where the speaker was Susan Love. Someone asked her about DCIS and how much could come back as something invavisive
her answere was it is that we cannot tell what will ultimately turn invasive/nasty so we treat all as if it may
but I am still cutting off my AL at 5 years pending I get past my upcoming 5 year mamo
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My 5 years on Femara is up in 7 days. I don't plan to stay on it one minute after that. I am tired of feeling like I'm 75 years old instead of 57. I've spent most of my 50's dealing with s/e from surgery, chemo, and Femara. I'd like to try being a normal 57 year old for a change.
A 2% or so reduction in risk is just not worth it, given the bad s/e of Femara I've had - not only the standard fatigue and aches, but bone loss, a retinal tear, weight gain, and increased cholesterol levels. Also the aches and fatigue make it more difficult for me to exercise consistently, and there are many many studies showing the benefits of exercise in reducing recurrence. So once I take my last pill this Sunday, I'm done.
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Yea Mary! Of course, you are already quite a few notches above 'a normal 57 year old', so the skies the limit!
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My actual therapy drug is called Letrozole.(not one of the choices) I don't know if it is known by another name. It is for 10 yrs. I didn't get all my testing done till a month after surgery. It was the oncotype dx. To determine if I would benefit from chemotherapy +hormone.
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The brand name for letrozole is Femara.
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Interesting. Just to respond randomly to some of the above, IMHO:
--because Tamoxifen is generic now/i.e. 'cheap' , and because it has been around, widely used for over 30 years--much is known about it and it is considered to be relatively safe and effective, I think 10 yrs will become standard of care recommendation to everyone, not just 'high risk'. I would be surprised if it didn't. We'll see what future NCCN guidelines have to say. If next year's doesn't embrace it as standard of care, I say give it one more year!
I say this in part because the day is not yet here when anyone can say for sure whether or not someone's 'low risk' tumor can be metastatic in 15 years.
-also, despite all the wonderful discovery and promise of genetics, it still hasn't been able to guarantee for us anything, just a more refined way of hedging bets. When one has a low oncotype, correct me if I'm wrong, it's not a guarantee of anything, other than good odds. Again, so long as everything remains a bet, a gamble, a risk, I don't see how any doctor would NOT recommend a cheap, reliable, relatively safe drug that has been widely used for over 30 years (lots known about it). Whether a woman wants to take it for 10 yrs will be another story. And if her risk is 'low', and the SEs too unpleasant after five years, she may say no thank you and her md might say, 'fine'. But I think every onc worth their salt will begin to suggest it.
Here's my new favorite quote (thank you Daniel Boorstin): The greatest obstacle to discovery is not ignorance - it is the illusion of knowledge.
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