How Many are doing 10 years on Aromatase Inhibitors
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I saw my MO a few days ago. She said that so far there is no evidence that staying on AI beyond 5 years offers any benefit. So she has switched me to Tamoxifen. I just started a few days ago so I can't see any differences yet.
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Pip57, love your idea. I am now on year 8 just going year by year.
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Hi All.....
I don't come on here often anymore but just happened to see this. I had a grade 3 tumor and an Onco of 35......:( I finished Letrozol in May of 2013. Took it for 5 years. My Dr. said no, to any additional years on the stuff because there was absolutely no evidence that it would help.
I am happy that I don't have the painful joints I had. At about 4 month after going off, it all disappeared. I am thankful for that. Taking drugs into my body for no reason never appealed to me. I pray now that all stays well. Good luck with your decisions.
Artsee
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Hey, artsee! Fancy seeing you here!
I think it's so interesting, in an academic sense, that our docs can go to the same meetings and read the same journal articles but come up with exactly the opposite conclusions. My onc is at one of those comprehensive cancer center/teaching hospital places where the docs take turns serving on review panels. After 6-1/2 years with her, I expect her to be up-to-date but not necessarily willing to venture into unexplored territory. So, at my 5-year mark, I thought she might let me stop taking Arimidex, given the absence of solid evidence in favor of continuing.
That's not how the conversation went. Yes, if I'd been having terrible SE's or my bones had weakened, she would have said "Stop". But my SE's are tolerable and my bone density, though osteopenic at baseline, has held steady. At 6 years (this past April), she told me that she would have been okay with stopping at 5 years if my recurrence risk hadn't been so high. Then she referred specifically to my Oncotype score (26) as being the indicator of "high recurrence risk." I'd read a report that said, for strongly ER positive (but HER2 neg) tumors, recurrence risk was even higher in years 5-10 than in the first 5 years. She had read that report; she speculated that the increase in recurrence risk in the later years might be the result of stopping tamoxifen or AI at 5 years.
Then I asked the million-dollar question: In women with supposedly slow-growing, ER positive tumors, are we just delaying the inevitable? Is it possible that there are tumor cells lurking somewhere, suppressed by whatever treatment is being used, but ready to start growing when the treatment stops or they get stimulated by something else? She answered, "Yes, that's looking more likely." Sheesh. A time bomb.
otter
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Well, around here it is still stop after 5 unless there REALLY is a high risk of recurrence (ie being Stage 3), and then it is still a shot in the dark because, at this point, there is no evidence saying that it actually does any good.....it is kind of a 'damned if you do, damned if you don't' sort of thing.
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Otter, that is more or less how it was explained to me.
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Otter, I love the information you provided. This is very similar to the information I received from Vanderbilt, an excellent research hospital.
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Yes Otter interesting-I go to MSKCC and was clearly told that the risk of recurrence from ER + actually decreases every year, though not necessarily by much--the recurrence risk can still be relatively high in years 5-10 or 10-15.
So I'd be curious for the citation / reference to the report you read that says that the risk recurrence increases in later years. Thanks in advance
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Here is a cite to what my understanding is -- rates do go down with time, though perhaps not far enough, fast enough!!
From: http://www.hopkinsmedicine.org/avon_foundation_br...
Breast Cancer Recurrence
breast cancer specialists monitors patients very closely for those first two years. Some patients may be monitored longer, depending on the stage of their disease and other prognostic factors about their breast cancer. Your risk of recurrence is never zero; however, as more time passes, your risk goes down. (emphasis added) Read about the 10 lifestyle changes you can make to reduce your risk for breast cancer recurrence
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Before everyone becomes upset, I urge everyone to put into perspective their own personal risk of future recurrence. Yes, it is true that ER positive breast cancers are more likely to recur at a later date in time compared to ER negative tumors, the likelihood of recurrence is still SMALL. Furthermore, as this study suggests, for many of us, it will recur so far out into the future, that the likelihood of it leading to death is small and it is more likely that you will die from something else.
http://clincancerres.aacrjournals.org/content/19/23/6389.full"...However, the proportion of patients carrying dormant cells may be much higher if in some patients these cells never progress to become macrometastases during the patient's lifetime, and even if they do, the resultant slowly growing metastases may remain asymptomatic and undetected. A recent example of a patient cared for by one of the authors (C.K. Osborne) who was found on a CT scan ordered for a kidney stone to have a 5-cm asymptomatic osteolytic lesion in the pelvis proven on biopsy to be an ER+ breast cancer metastasis developing 22 years after her primary tumor diagnosis illustrates this possibility. Even proposing to evaluate asymptomatic patients looking for occult metastasis presents practical and ethical dilemmas. With the rapid development of imaging and other detection technologies, it is foreseeable that we will be able to detect submillimeter or even single cancer cells in the future. However, key questions remain: (i) How many of the detected dormant metastases will progress to threaten patients' lives; (ii) How can we distinguish the dormant metastases that are likely to progress from those that are not; and (iii) What therapeutic strategies can be used to eradicate them or prevent their progression? The answers to these questions require us to directly investigate dormant cancer cells. Thus, there are urgent needs to establish biologic models of dormant metastases in the laboratory and obtain patient-derived dormant cancer cells from the clinic...."
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one more thought....head over to the mucinous carcinoma thread and read about my recent visit with Sloan Kettering researchers. There have been important developments in observing recurrences before they appear symptomatically and/or on imaging.
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My MO at Dana Farber just put me on tamoxifen for 2 years with a plan to switch to AI for 3 years .No mention of 10 years and I suspect the 5 year total is probably related to low oncotype score. I have only been on the tamoxifen for 2 months and side effects so far are very manageable so not looking forward to the switch but that's a ways off. I can't imagine staying on an AI until I am 70 if SEs are bone loss and sore joints.
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Yes thanks VR I'm not freaking about recurrence or anything. I'm just trying to correct misinfo that is out there. I ask posters to validate it. When they don't, it's inaccuracy speaks for itself.
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I just had my annual visit with my MO (three years down, two to go). I asked him what the odds were that he'd be suggesting 10 years of Anastrazole for me. His response was no, it would be highly unlikely, particularly since I've had such dreadful side effects from it.
His feeling is that since the results are not far from being released and there has been no opening up of the study or any "positive" information leaks, that it is not likely that the results will indicate 10 years of use.
I'll go with that. I'd have to see some pretty amazing numbers to even consider lengthening my sentence.
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A friend of mine's doctor said the same thing....that the trials are well along and if there was compelling evidence to stay on, it would have been leaked by now.
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my doctor told me day 1....10 years! He also said that because early stage ER + have good outcomes, you won't see many recurrences early...so it takes longer periods of time to discover clinically significant numbers. Furthermore, if women get early stage cancers later in their lives, they might die from something else before a recurrence would be realized. So....studying the effects of the long term usage of a medication might take DECADES!
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Saw my NP yesterday and she again hinted at the 10 years. I again told her we'll see when I get to year 5. So far I've been on it for 3.5 years. I'm considered high risk for recurrence due to the large size of my tumor. Not sure if the HER2+ factor is part of it too since HER2+ spreading regardless of node involvement (of which I have none) seems to happen more often than some of others.
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I saw my oncologist last week and I will be continuing on it. He didn't say 10 years but I believe that's what it will be as I was 90% estrogen positive. Next February I will have been on it for 5 years. My bone density is good and I really don't have side effects although I did the first 6 months I was on it. So I can live with it.
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Cowgirl13, my dx is my similar to your dx. I am now on working on 8 years on AIs with few side effects. My onc believes that those who are very ER positive should be given the option of staying on the AIs.
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Aug242007 - do you know what your onc considers very ER positive? I was 77% ER+ and am curious as to what range that falls into. Thanks!
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Aug242007, I also go to Vanderbilt and was just diagnosed 6/14 with umx 7/14. My doctor has also told me 10 years but admits, things change and in 5 years, maybe they will drop back to saying only 5 years. She said studies had shown that they were seeing a lot of recurrence after that 5 year time frame when the meds were stopped and that was why the recommendations had been changed. So far, I'm not having a lot of side effects, so guess I'll do what they say and hope they know what they are saying.
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Well I am proof that it can come back behond 5 years. Mine returned in 6 years. I had stopped Hormone blockers after two d/t crippling joint pains. So for ER pos keep taking blockers as long as you can tolerate them. At 67 ( tomorrow) I am hanging in. Yes BC does come back sooner or later. I just wish they had been more up front about in the beginning.
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GrtammyR, sorry to hear you are back to square one. You are what I fear. I have a friend who posted a sign on her facebook page after having her mastectomy in June and having chemo, saying Cancer Free 9/4/14 and I'm looking at it thinking, how do you know that????????????
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none of us know for sure. That's why we suffer through side effects to do everything we can to avoid a recurrence. At least we will have peace knowing we did all we could do.
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Yes Mel147,
I am also interested to find out what they consider VERY ER POSITIVE. I was 80% ER and 80% PR. I guess that is fairly high, compared to some.
I am at 7 years of taking aromatase inhibitor Femara. My latest bone density results show that my density has taken a real dive, and when I saw my oncologist, he is now considering taking me off the Femara, and getting me to do the last 3 years on Tamoxofin.
I asked him what my risk of recurrence was at this point, and he was very guarded, but conceded that with Luminal A, ER positive, and positive gland, I am at real risk of recurrence for quite a while yet. He also said they do see quite a few recurrences in the few years after people stop medication at the 5 years mark.
He said if I can get to 10 years without recurrence, then my risk does drop, however some risk of recurrence does continue ongoing with ER positive.
Ched
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Aussie, the real bitch of BC, and it is a bitch that is not talked about much, is that "conditional survival" is more or less flat. This means, in practical terms, that no matter how long you survive the stupid beast, your risk of recurrence remains fairly steady.
This is not true of all cancers. There are many cancers where the 5-year survival mark is a real indicator of long-term survival. With BC, not so much.
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aussie - thanks for your comments. I did not have any positive nodes, but had 4 small invasive tumors. My onc said they don't have a lot of data on the small ones as to how they might progress over time. My largest was only 3mm, smallest was .8mm, so they were definitely very small. For those reasons, he does not have me taking anything and I get a bit nervous about that. I have one ovary left and it seems to be working fine (I just turned 48), so it does make me worry. I've done a pretty good job improving my diet but am having a tougher time adding in the exercise I know I need. I need to set some goals with that and make time for it.
momine - you make a good point about the 5 yr survival mark being a real indicator for many other cancers but not so much for bc. Just before I was diagnosed I was watching a program about a golfer whose mom had had bc. I just didn't understand it because she had it, fought it and was cancer free for 12 years, then it came back and she passed from it 1 1/2 yrs after that second diagnosis. It made absolutely no sense to me until I was diagnosed and started reading more about bc. I have learned so much from this message board about the real life experiences of women with bc...it has been so valuable to me. angelia's post about her friend's FB comment is haunting to me. Although I don't want to spend the rest of my life letting worry over a recurrence ruin my life, I also would hate to be just living life thinking I was home free and then get blind sided. It helps me to have as much info as possible to feel more prepared should anything come up later.
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mel, if you are nervous, have you considered getting a second opinion? I was fine with my docs and have not decided to do 10 years, my junk was small so I ended at 5 years but you may want to talk to a dif doc, I have done that on several other health issues
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proudtospin - I have thought of that, but then I have done a lot of checking online with guidelines for treatment, and I have spoken to both the breast surgeon and the nurse navigator and it seems like he is in keeping with the guidelines so that makes me feel better. I guess my thought is, no matter what, I could probably find someone who would tell me to take the drugs, but I really don't want to take them just because I'm paranoid if it's not the recommended treatment for my stage. I think moreso than the drug treatment I want to check into possibly removing my last ovary, or suppressing it. I have heard of a number of women doing that and wonder if that would be a good plan for me.
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just saw my onc yesterday I am 3 years out. He indicated that I will do 10 years and he says evidence pointing toward 10 years and that's what he wants me to do. Sounds fine to me
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