Does Arimidex prevent mets at all?
I am 46 and have had a bilateral MX, hysterectomy and oopherectomy after I was put on Arimidex. I know it prevents recurrence - by a significant amount. But what about mets? With no breasts, I assume my risk of recurrence is pretty low. I would like to go off it, but not if it reduces chance of mets.
My onc had mentioned it does, but I have seen nothing ANYWHERE stating this. I don't want to offend her by asking to see the studies, but at the same time, I don't want to have a hip replacement by the time I'm 50, either.
Just a little confused and wondered what your oncs have told you about mets and AI's. 
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Had a 3 year run before progression. Did have a recurrence but some of the blame can be placed on the fact I was only getting blood tests and chest x-rays. Should have had ct scans or even an occasional pet scan.
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Recurrence can be local or distant (mets) and arimidex helps prevent both.
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Hi Fearless one,
The way I understand it is the a recurrence is a recurrence. There is no guarantee it will be local - it could also be distant. Arimidex stats are based on a reduction of all recurrences - both distant and local. On some thread or website, I read that in cases of recurrence, a majority of them are distant so you definitely don't want to count on going off the arimidex and possibly incurring just a local revival of the disease. While that would be no fun either, it is the distant recurrence which is more worrisome. Good luck on your journey! Best, beau
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Thank you, that is what I needed to read! So it was confirmed that it impacts mets. I thought it interesting, however, that there was no impact on overall survival. You would think with reduced risk of mets there would be an increase in overall survival?
I also didn't realize that "recurrence" could refer to mets. I thought recurrence meant only in the breasts....
Sooooo I will be a good girl and stay on my pills!
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It's impact on Overall Survival vs tamoxifen. Both significantly reduce mets, but Arimidex is slightly more effective in postmenopausal women.
I have a friend who was IIb and wasn't initially given tamoxifen (this was before Arimidex). She got BC lesions in her lungs which were discovered when she went in for foot surgery. They were able to remove the large lesions but not the small ones with surgery.
After a couple of years on Tamoxifen, the small lesions were gone and tumor markers were once again normal. She has moved on to Arimidex and continues to be cancer free. This was more than ten years ago that she had the lung nodules.
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I wonder what the numbers are, though - in other words, if it prevents mets better than Tamoxifen and Tamox reduces by 5% (just for example, I don't know the actual number), then by how much does Arimidex reduce risk of mets?
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I am wondering the same thing fearless. I had double mastectomy last May and just had salphyngo oophorectomy 3 days ago. I understand that we are still producing small amount of estrogen in our adrenal glands and fat tissue but I think is very small amount. I am wandering if diet and exercise could reduce that estrogen even further and how much of estrogen we are really fighting with AI.
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The AI's (and tamox) are to prevent re-occurence....this means mets for most of us.
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I still can't find any numbers in any studies. What does "slight improvement" or "significant reduction" mean? It just all sounds so vague. Should be an interesting conversation with my onc.
And why always compared to Tamoxifen? I don't care about Tamoxifen, never been on it and never will be.
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Fearless, I'm on Arimidex/anastrozole, so I know how frustrating it is when the studies all compared Arimidex to tamoxifen. Like you, I've never been on tamox and don't think I ever will be. Wouldn't it be helpful to know whether Arimidex helps when compared to not taking an estrogen-blocking or estrogen-suppressing drug at all?
Mostly, the answer to that question isn't known. The reason is because the estrogen-blocking and estrogen-suppressing drugs weren't developed all at the same time. Tamoxifen was the first "breakthrough" estrogen blocker. It had been used for quite awhile (many years) in BC patients before Arimidex hit the market. So, when Arimidex was being tested, the "negative-control group" to which it was compared was women taking tamoxifen.
Ideally, a new drug would be compared to a placebo (no drug at all); but that would have been unethical in the case of the AI's. Researchers who design clinical trials can't randomly assign women to a new (unproven) drug vs. no drug when there is an existing drug on the market that provides a measurable benefit. At least, that's the rule here in the U.S.
That policy does complicate things when women want to know their risk of mets ("distant recurrence") if they don't take an AI or tamoxifen at all. It's possible to estimate that risk using fancy mathematical formulas with lots of assumptions, and data from unrelated studies that were never meant to be compared to one another. I guess for those of us who are willing to take one or the other, we can feel better (IMHO) in knowing that tamoxifen works, and most studies have shown the AI's work even better.
otter
P.S.: Much of the information on these discussion boards about whether or not the AI's work is very muddled and confusing. There have been debates about whether a decrease in risk of recurrence is really a benefit at all -- shouldn't a drug have to demonstrate an increase in "overall survival"? Other debates have been triggered by people claiming that the AI's have "no benefit" (i.e., the benefit is negligible), but the studies they cited as evidence were comparing the AI to tamoxifen. Still other arguments erupted when people claimed the "absolute benefit" of tamoxifen (the control in most studies on AI's) was ridiculously small (just 1 or 2%); but the clinical trials they cited were testing whether tamoxifen could prevent BC in women who had never been dx'd in the first place.
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The AIs are compared to Tamoxifen because it is the first drug that was developed to prevent these types of recurrences, it has a 20 year track record of being pretty safe (yes, I know there are potentially not so good side effects, but they are rare, and there are tons of threads that rehash all these issues), it's affordable because it's generic, it is the only medication that can be prescribed for premenopausal women, it doesn't damage bones in post-menopausal women, in fact, it is associated with bone density stability/increases.
It also uses a completely different path than the AIs to block estrogen, so it is another weapon in our arsenal. There are women on the Stage IV board who recurred on AIs, and achieved NED on tamoxifen.
So there is a lot to be said for Tamoxifen.Sue
Oh, hey Otter - I was writing while you posted, so didn't see you. Nice to know that you are still NED'ing along!
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Hi, just my offering, but I was told that tamoxifen can give you a percentage of cutting a chance of recurrence/metastises by 50%.
Arimidex is about 57%.
To clarify those confusing stats:
Say you had Stage 1, no nodes. Your chances of never seeing BC again are pretty great. They told me about 85% without tamoxifen. With tamoxifen, it rose to an average of 97%. I can't figure out how they arrived at that one either.
I did go off the tamoxifen, got a new cancer, which they think, but are not sure, was a tiny piece they had missed the first time (only got surgery from a mammo, not an MRI) it was held in check by the tamoxifen. When I went off of it, a year later, I had a new cancer. The theory was that I was still nowhere near menopause at 51 and excess estrogen caused it to grow like crazy. (I was the estrogen queen). BTW, no nodes and DCIS 1st time. No nodes the 2nd time either, but an invasive component to the cancer, so FF to mtxmy and recon.
OK, FF to 3 years out, had Lupron (ghastly) and eventual oopharectomy/hysterectomy, my choice, to get me into menopause to be able to take arimidex as pre menopausal ladies cannot take that and I'd had 5 years of tamoxifen already.
I may, or may not be one of the ones who ends up taking arimidex for more than 5 years, but you had better believe, that I am getting a prophylactic mtxmy on the other girl. Firstly to match, secondly to reduce risk (from 35%, 15% while on arimidex chance of new BC or recurrence) down to 1%
.So, to recap, as if you weren't confused enough already. Roughly, 50% from tamoxifen, risk reduction, and 57% reduction from arimidex. If you know your recurrence risk based on your oncotype score, that can help you to figure this out further. I just know that little white pill gives me alot of peace of mine for sure!!
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p.s.: you have significantly lowered your risk also, as I was told, by the oopharectomy/hysterectomy. We still adrenals and body fat, but it's a very helpful way to lower estrogen/risks. Not fun, in terms of sexual SEs, but effective!
(this was MSK's call and advice; the decision was mine alone)
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Thank you so much ladies, for this extremely interesting thread and the very valuable information you are providing here (so much more than my onc). I started taking Arimidex in Jan. 2011 and am 100% estrogen positive. I feel a bit dense, but still don't undertand the part about it making no difference to overall survival. If Arimidex is more effective in preventing mets, doesn't that impact overall survival rates for breast cancer. I mean, if you don't ever have mets, you are more likely to survive. Also, I am 50% progesterone positive. What role does progesterone play in hormone therapies for breast cancer? You don't hear much about it.0
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If we use the Oncotype DX score to estimate risk, it's important to remember that the recurrence risk predicted by that score is based on the assumption that the person will be taking tamoxifen for 5 years.
Take away the tamoxifen and don't substitute it with an AI, and that risk of mets estimated by the Oncotype score (mine was 17% without chemo) would likely double. That's the approximate benefit of estrogen blockade/suppression in ER+ breast cancer.
otter
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Thank-you, hillck. That was a very clear explanation, i.e. that the stats are being to compared to death by any means over a specific time period. It's really amazing how much you ladies know and are kind enough to share.
Does anyone know about the effect of the positive/negative status of progesterone on treatment or prognosis?
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otter- Your explanation of stats for recurrence is not how it was explained to me (by several Oncs). I admit I am still confused and wish someone would definitively clear this up, as even one other Onc explained the stats your way. I know that recurrence stats are dependant on each of our particular BC stats. Yes, Tamox or AI reduce chance of recurrence by 50% which sounds huge. However, if your chances of recurrence is very low, your benefits of AIs are also smaller. Lets say your chance of recurrence is 6%. By taking AIs, you would reduce your recurrence 50%. So that means 50% of 6%= 3% added reduction of risk, you now have a 3% chance of recurrence instead of 6%. As my Oncotype score was 16 my chances of recurrence was 10% if I take AIs. I was told without AIs my added risk was about 5% (50% of the 10%) , added to the10%=15%, not 20%. Needless to say, I am still somewhat confused about how they calculate all this. I know I am not alone in my confusion and I resent that the doctors don't explain it better. They basically say "just take it because it reduces your risk", don't ask for details. For those of us who want to weigh benefit vs. risk, or can not take Tamox because of medical reasons, it is important to know just how much added risk we are taking on. Hoping someone can definitively clear this up.
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Ladies, thank you so much for your responses. Annie, were did you get those stats? Did your onc tell you that? They are very encouraging, I must say!
Perhaps I should stay on the pills. I guess I just want to read some actual studies where the numbers are published and I can't find any.I never had onctype test due to lymph node involvment, my docs wouldn't order the test, they just told me I would need chemo, so I don't know how my numbers would compare.
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DesignerMom, it's the math. I don't know what your oncos told you, so I'm just going to work with the numbers you used in your post.
Okay, so let's assume that taking tamoxifen or an AI will decrease the risk of recurrence by 50% (that is, cut the risk in half). I know the AI's are supposed to work slightly better than tamoxifen, but let's keep things simple for these examples.
If someone is told her recurrence risk will be, say, 6% if she does not take tamoxifen or an AI, and tamoxifen or AI cuts that risk by 1/2 (50%), then her risk will be 3% if she takes the tamoxifen or the AI. [6% x 0.50 = 3%] So far, so good, yes? (That's the example you used.)
That means if someone has a recurrence risk of 20% without tamoxifen or an AI, then taking the tamoxifen or an AI would bring her recurrence risk down to 10%. [20% x 0.50 = 10%] Similarly, a 30% risk of recurrence without the tamoxifen or AI would be decreased to 15% with the tamoxifen or AI. (Note that we're multiplying the risk by the risk-reduction factor; we're not subtracting the risk-reduction factor.)
Now, let's look at it the other way around, using your own example: "As my Oncotype score was 16 my chances of recurrence was 10% if I take AIs. I was told without AIs my added risk was about 5% (50% of the 10%) , added to the10% = 15%, not 20%."
That can't be true, unless our assumption about the 50% risk reduction with tamoxifen or AI's is incorrect. Check the calcuation: If your risk without the AI's really was 15%, then with the AI's it would be just 7.5%, not the 10% indicated by the Oncotype score. So, something's wrong with the math.
The formula for figuring your risk without tamoxifen or an AI is this (assuming the 50% benefit is correct): 10% = 0.50 x "N" (then solve for "N")
Okay: If someone was told her risk of a recurrence was 3% after taking tamoxifen or an AI, what would it be if she did not take the tamoxifen or AI? It would have to be 6%, which is twice (2x) the risk it would have been with the estrogen-suppressing/blocking drugs. That's basically because the inverse of 1/2 is 2. [3% = 0.5 x "N" and then solve for "N"]
If the drugs cut the risk in half (i.e., reduce the risk by 50%), then not taking the drugs will double the risk....not increase it by 50%.
Unfortunately, I never was any good at explaining math problems.... It seems I'm much better at yelling and waving my arms. <sigh>
otter
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otter- Thank you for your explanation. I guess I am confused because 3 different Oncs seem to be telling me 3 different recurrence rates. I am going to wrestle with my many notes and stats once again to see if I can come up with my "final recurrence stats". Jeez! Wouldn't you think this would be pretty easy to confirm at this point in my treatment??? And yes, I am exceptional at waving my arms around too!
fearlessone- If you are really looking to find detailed medical studies, do you know about pubmed.gov? I think every trial and research study ever published is there and you can search by topic. It is very medical, but may help.
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My onc said Arimidex would reduce my risk of recurrence by 50% - so that would mean without it I would have had 100% risk of recurrance (for stage IIA)? I don't know, that just seems off. But perhaps what she told me was not correct to begin with.
DesignerMom, no, I don't know that site - I will check it out!
Otter, thank you so much - :-)
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Fearless... nah, that's not what it means. If Arimidex "reduces your risk of recurrence by 50%" (which is what many of us have heard or read), that means your risk on Arimidex will be 50% of, or half of, whatever it would have been without the Arimidex. The "50% reduction" in this situation is the relative benefit (Arimidex compared to no Arimidex).
The recurrence risk in someone who is not taking Arimidex could be anything from 2 or 3% to 75 or 80%, for instance -- it would depend on the size of the tumor, the number of positive nodes, the aggressiveness of the tumor cells (histologic grade, Ki, Oncotype DX score, etc.). Even the person's age could be a factor. Your tumor was a hair less than 2 cm, but with 2 positive nodes, you ended up as Stage II. I'm just guessing, but no way is your recurrence risk anywhere near 100% (!), or even 50%. There are formulas that can be used to figure it out, like Adjuvant! and Cancermath, but they require additional data. Whatever the risk is, it would be half as much if you took Arimidex than if you didn't.
Let's say you've built a house, and your brother is jealous; so he announces that he is going to build a house "twice as big as yours!!!". Well, the size of his house will depend on the size of your house. If your house is already a mansion, his will be castle-sized. If yours is just a single room, his will have two rooms. Etc. It's all relative.
otter
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I get it now, lol! Otter, I have no head for math! Glad you are here...... I understand now.
Thank you , Hillck!
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Otter, I reread the ASCO guidelines for adjuvant therapy this week, and it made things a bit clearer for me: I'm in that group that NCCN would consider for "extended" adjuvant treatment--likely to finish up 5 years of tamoxifen before I finally transition into menopause.
My onc said, "No, 5 years of tamoxifen and you're done" and I faxed her the NCCN guidelines and got no response. Hmmm.
So, I looked at the ASCO guidelines from 2010 and it helped me understand a bit why she'd say that: it's a free article to download off of pubmed
http://www.ncbi.nlm.nih.gov/pubmed/20625130
Found this in the article:
In absolute terms, the reduction in risk of recurrence associated with AI-based therapy compared with tamoxifen is modest, typically amounting to < 5% through multiple years of follow-up
I had stopped going up to Dana Farber to see the guy who wrote this article, but when she blew me off, I might just take a ride....
Thanks for the explanations.
Kira
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Oh boy...this is a good one. I suppose I could take a stab at an over simplification. For the reduction in recurrance:
Tamoxifin - pre or peri menopausal - limited to 5 years
Arimidex - post menopausal but studies now show that it can be taken for a longer period than Tamoxifin
There is little difference in the overall survival rate between the two but a slightly better reduction in recurrence with Tamoxifin during the first 5 years - the limit of taking the drug.
At the time of my initial breast cancer - given all my pathology which is different for just about everyone - I stood an 85% chance of no recurrence local or metastatic within 5 years. And this was written out for me and compared to doing nothing where the possibility of recurrence was a crap shoot - it may or may not but that taking the drug would increase the odds significantly. The presumption was that for each year past the 5 year mark, the chance of a recurrence would continue to decrease. I made the 5 year mark.
Newer studies that have not yet concluded seem to indicate that is not the case for all pathologies. For instance, if one has node involvement past 4 nodes, the very early studies seem to indicate that somewhere around the 10 year mark, it becomes active while being dormant during the years 6 through 9. I don't believe there are confirmed published studies relating to this possible conclusion as I have not found any. I think the comparison of the two drugs is seeing if when the 5 years of Tamoxifin has ended, is there an increased advantage to then going to Arimidex and acheiving the same no recurrence statistics as the first 5 years.
I know that many of us who have informally noticed an increase in the number of mets patients in our respective treatment facilities that are having recurrences at the 9 to 12 year mark may seem to indicate that the use of both in sequence may be the next big thing in prevention of recurrence.
Much has changed since then but I truly have not been able to find a standard 'table' like I was shown years ago. I don't think they publish it anymore which is likely why do don't find any specific solid statistics in the rate of recurrence. I was counted at 5 years in the statistics as a 'survivor' for 5 years and I thought I was home free. Now at 12 years out and almost 2 with mets - I have no idea what set of statistics I am in on the 'time before recurrence'. Hopefully, we will see some good information come from these newer studies when they get published that will allow us to have a better warm fuzzy feeling about what we can expect - much improved of the nebulus fog we look at now.
The bottom line - taking the preventive does make a difference. That is for certain for both local and metastatic recurrence. I believe it to be significant enough as I was told to warrant following through.
Hope that helps a little bit...LowRider
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Okay dumb questions from the newbie, and this is a serious question, I'm not trying to be dense or anything.
1. Do we know what the benefits are for people after the 5 year mark? Or I guess, if I take tamoxifen for 5 years (as my doctor is recommending), what happens on year 6? As long as scans are good, I'm considered NED? Are there stats to show how many people end up with a recurrence in year 7? (I'm picking random number here)
2. Per the post above there seems to be recurrence rate at 10 to 12 year mark...any chance that the drugs are just holding it off? And once a person goes off the drugs, the cancer is able to come back? I don't know if I am making sense here. If Tamoxifen is good for 5 years, and someone gets cancer in year 7, is it possible that the cancer was always there and Tamoxifen just held it off?
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Emaline, I completely know what you mean and that was going to be my next question. Does it just hold it off? Since the women are only followed for 5 years, does that mean as soon as we go off it, we are back to our original reccurrence rate?
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Lowrider, thank you so much -
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My understanding is if the cancer is "active" then depriving it of estrogen will essentially starve ER+ breast cancer. But there is the possibility that there are cancer cells that are dormant so depriving them of estrogen in this dormant state does nothing.
But just because you have dormant cancer cells doesn't mean they will "turn on" and grow tumors. This is the big million dollar question. If they only knew what turned the cancer cells on they might be able to either turn the switch off or stop the switch from turning on in the first place.
I alway found this article interesting although it is now almost 3 years old so I'm not sure if the information has been backed up by other studies:
Breast cancer recurrence seen as low after 5 years
By Will Dunham
WASHINGTON | Tue Aug 12, 2008
ReutersHere is another article:
Risk of Recurrence in Early Breast CancerThese might be good articles to print out and discuss with your onc. I would assume your onc would have more up to date info.
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Lago the first link works great, the 2nd won't work for me.
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