How Many are doing 10 years on Aromatase Inhibitors
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starwoman - got it - when I clicked on the second link within your first link trial itself I didn't see that info, but I see it now when I clicked on the first link and read further down. It seems to be potentially geared more toward those who have completed five years of Tamoxifen and then are being switched to an AI drug, but some number of the participants will certainly be those who have been on an AI from the outset - either way it should provide needed data.
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and remember if the women have completed the 10 years on AIs it still takes more time to figure out if there is benefit. Continuing AIs for 10 years is hoped to reduce recurrence in the following 10 or more years.
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lago - I wish there was more solid info available for those making the decision at their five year point, but I am glad someone is gathering data now. I guess those of us at this crossroads have BCI available, or if they are tolerating AI drugs decently are willing to stay on them. I wish the number of those that benefit from continuing, according to the BCI test info, was more than the 6% or less they cite.
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That is a good point Iago and might explain why the end of the overall trial is 2021 - I wondered about that!
Also, the trial seems to be specifically looking at resistance / susceptibility to letrozole:
This trial tests the hypothesis that introducing 3-month treatment-free intervals during the course of five years of extended adjuvant letrozole will improve disease-free survival. This hypothesis is based on the theoretical principle that letrozole withdrawal for 3 months will permit some estrogenic stimulation which makes residual resistant disease susceptible to letrozole reintroduction.
My referral to the MO was based on my request to the BS (who does the monitoring) for a change of AI to see if SEs could be reduced. There was a reluctance to change and I wondered if this might have to do with keeping other AIs for the future in case resistance developed. However, I notice that changing seems to be reasonably common among women on this site. Was the issue of resistance ever discussed with your changes of AI SpecialK?
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starwoman - no, zero discussion of AI resistance. I don't know if your question was prompted by noticing that I did switch from Femara (letrozole) to Arimidex (anastrazole), and then back to Femara. This was done initially because after six months on Femara I developed a trigger thumb on my dominant hand and my MO suggested switching to see if it would go away. It did, but after a year I developed a trigger on my left hand and one foot and ankle - plus an inflamed knee that required a cortisone injection, so I switched back to Femara because my MO favors it anyway. One thing I have seen though that seems consistent with this idea is that sometimes switching back to an AI previously used can work for some of our stage IV sisters, so there seems to be some merit to concept.
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Yes, SpecialK, I did notice your changes in your signature line - thanks for filling in the reasons.
I may re-visit changing AI with the MO after upcoming bone scan results in a few weeks (previously mildly arthritic hip, and now knee, have become extremely painful on anastrozole) and I will be glad to have reassurance that arthritis is all it is. If I do see her again, I'll ask her about the resistance issue and if / how it influences her thinking on changing / extending AI treatment (though she is not very open to discussion - putting it mildly!).
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AI resistance, if you see it mentioned, usually is referring to those who are one it who have metastatic disease.
BTW so far no info has been releases so that means that there is nothing significant to report.
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my MO said ir's luck of the draw what has the least SEs. She starts with anastrozole as it is cheap. If that has SEs tries Aromasin as it works differently. Then tries letrizole. I was on all 3 between 4/15-7-15. Said if SEs persist will talk about tamoxifen Had trigger thumbs and finger with letrizole but not as bad as SEs on others They are better now
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I just had my yearly with my MO and he recommends for me to have the BCI test done. He feels I'm borderline for whether or not he'd recommend 10 years and the test would help solidify the decision. (My pros - Stage 1, no nodes, no lymphvascular invasion ... my cons - young age 43 at diagnosis, high grade, high ki67) My oncotype (though low) was closer to borderline too (14).
So I have a couple questions that I was wondering if anyone here knows the answer to before I start researching...
I was on Tamoxifen and am unwilling to switch to AI's due to my osteopenia and more severe possible side effects in trade for the minimal additional benefit an AI would give me over Tamoxifen. My MO was fine with that but I'm wondering if this BCI test is even applicable if I'm doing Tamoxifen instead of AI's? My MO didn't think it was a problem. Has anyone heard otherwise?
My MO said my current risk was about 6-7% for recurrence..and that if the tests show I would benefit from an additional 5 years... that the benefit would reduce my risk by 50%... i.e. my risk would drop to 3-3.5%. That doesn't seem like a huge difference for me? Am I missing something?
If my insurance agrees to pay for the test, my deductible is $2500 so I'd probably have to foot the bill. SpecialK had mentioned that the BCI will work with you if insurance won't cover...but what if they'll cover it but your portion of the cost is high? I don't want to be stuck with a huge bill. Does anyone know how much this test costs? Do they offer financial aid? Not sure I even want the test done if I have to pay thousands for it.
I should mention that I'm leaning towards being done with the 5 years of tamoxifen. As a Stage 1 person it all seems like a crap shoot. I could be already overtreating and will be fine no matter what I do, or I'm the unlucky one that will have it metastasize - no matter what I do? .... or 5 years of hormonal therapy was the magic number for me... or 10 years? I'm not sure if the BCI test will make it any more clear for me?
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susan....early on,while taking Tamoxifen, I had osteopenia. Fast forward, I was switched to an AI 3 years following diagnosis. Furthermore, for the first two years following diagnosis, I was doing ovarian suppression. The upshot? My osteopenia has been arrested. Go figure! I'm continuing endocrine therapy for two reasons. One, I have few side effects. And two, my MO isn't concerned about recurrence. He says my chance of recurrence is smaller than my chances of a new breast cancer....so.....I'm diligent at taking my AI and I hope for the best....I wish you well.....
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susansgarden - I have not seen any billing or EOB info on the test cost, but I'm willing to bet it is in the multi-thousands, consistent with Oncotype Dx or Mammaprint. Insurance did not pay for Mammaprint for me and the initial billing I saw was approx $5K. I recently received an AOB (Assignment of Benefits) form in the mail from Biotheranostics to fill out, indicating my approval for insurance to pay them directly, or if I receive insurance monies I agree to pay them. Included in these forms was a patient financial assistance form, but it did appear to be needs based, and for those who are uninsured or underinsured - neither of which applies to me. I did not fill it out because I also have no intention of paying them if my insurance denies the test cost. My insurance is all pre-auth referral, no deductible, no co-insurance. I have a co-pay only for all services. Biotheranostics failed to request a pre-auth referral before running the test, and I signed nothing saying I would be financially responsible - I didn't even know they were doing the test until it was already done. When I spoke to them they said if after all appeals (handled by them), insurance would not pay, I was not responsible for payment. I was able to determine that my insurer regards Biotheranostics as a provider, so we will see.
Edited to add: Out of curiosity I just checked my insurer's website - the test cost was $5400 and my insurance paid a big fat $0, so... this will be interesting. There is no record of any request for the pre-auth referral, so I am not sure if they are denying for that reason, or because they don't cover the test.
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thank you ladies for all your contributions to this thread
I just saw my MO yesterday and she said at least 10 years on HT..maybe even 15. The her2 part of my diagnosis is rarely discussed - the risk factors she is concerned with is 1. young age 2. grade 3 3. highl ER PR positive (95%) I did OS for almost 3 years, just stopped and my periods have not returned. I tried switching to an AI during that time and it was horrible for me (tried 2 types) so back on Tam. She said to stay on Tam bc I am tolerating it well and we can re-visit an AI at year 5. So I am in this for the long haul
these studies posted are so confusing and conflicting - yes/no to whether or not her2 plays in to the equation
this BCI test is something I will look in to...SpecialK those are very interesting results
I wonder what the cumulative effect is of years and years on a med...I just feel like if its not the cancer that does me in its all this crap I keep pumping in to my body
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rozem - interesting is an interesting word in summing up those results, lol! I am not sure how to feel regardless of what my MO recommends - relief that he wants me to stay on AI drugs beyond five years, or relief that I can stop. It is hard to know how to feel about it.
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Susansgarden and all, I love this thread. Susans... thanks so much for the discussion. Your dx is similar to mine and I am now getting close to the completion of 9 years. I wonder is I am over treating or not.
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Susansgarden as far as statistics… my chance of getting breast cancer at my age of diagnosis with my known risk factors was less than 2%, below average. So my advice to you is if you decide not to do it DO NOT blame yourself for not sticking with treatment. You might have been one if the 3-3.5% that would get it regardless.
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$5400 for the test? Ugh. I've since switched insurance plans but I have before hit my "lifetime maximum" for genetic tests from having the oncotype and the BRCA tests done. Not sure if that "follows" you around? So it does sound like I would be responsible for at least $2500 (my deductible). Unless Biotheranostics waives the fee, I'm not sure I want to have it done. Thanks for all the info SpecialK , I have a feeling they might waive the fee. The oncotype testing company waived my portion when I reached the lifetime max and insurance wouldn't pay.. but I think it was only around $500.
voraciousreader: you said " I'm continuing endocrine therapy for two reasons. One, I have few side effects. And two, my MO isn't concerned about recurrence." I'm not understanding the second reason? Your MO isn't concerned about recurrence? So why does that make you want to keep taking it? Is he not concerned BECAUSE you are continuing it??
I really would like to find out more about the cumulative effect of these medications. My husband thinks it should be a no brainer because I've tolerated Tamoxifen well. But I do wonder what long term damage it can do? And specifically what damage comes from cumulative use? Obviously having a recurrence would be far worse than anything Tamoxifen or AI's could do to me. I understand that, but don't want to make a decision out of (unjustifiable?) fear. I've already got rid of one good breast (peace of mind) and two ovaries (when they saw a concern that turned out to be absolutely nothing).
My MO's best guess is there is a 93% chance I'm done with breast cancer. Isn't that better odds than the general pubic? I guess I'm just trying to work through this and be at peace with my decision. I was thrown for a loop when the MO suggested all this yesterday. I thought for sure he would say I was done. I feel like I might as well consult a Magic 8 ball.
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Thanks lago. Yes, my husband and I talked about this a lot yesterday. He was concerned that I don't want to continue, but I needed him to understand that if I recurred it would still be "okay" with me. I could still recur after taking it for 10 years, or15 years. We just don't know. There are no guarantees.
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I came across this site/link while looking up late recurrence risk.
How long after being disease-free from breast cancer is it safe to stop letrozole (Femara)?
https://www.researchgate.net/post/How_long_after_b...
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susansgarden - based on what I have seen so far it is hard to decipher how Biotheranostics handles insurance, or denial of a claim. If you have no insurance, or insurance that doesn't cover a significant portion, it looks like they may work with you if you can show financial need - not sure about deductibles. If your insurance denies because this is not a covered item, it seems that the company will absorb the testing cost. That is what they told me when I inquired about this. Their insurance department handles all correspondence with the insurance company, and even if they are unpaid they do not withhold the test result from the oncologist. I already know my result through my patient portal (have not yet talked to my MO about it though) and Biotheranostics has not received any payment yet. I am wondering if they are willing to absorb some costs for those whose insurance denies in an effort to widen their database and gain FDA approval.
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This may have been discussed earlier... but this BCI test only tells you your recurrence risk/benefit from endocrine therapy for years 5 through 10. So just for the next 5 years?
I wonder if I was to recur in the next five years... is taking another 5 years of tamoxifen just delaying the inevitable? Granted another 5 years of cancer free is great but I just wanted to point out that it is not like the results could tell you that 5 more years = cured!
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I am 100%er POS 100%pr POS. My tumor was 3.5 the largest that is 17 nodes all negative. I had dcis and IDC. I had an ooph. I was told ten years of suppression
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SpecialK, it does say they will work with patients on payments too. I just keep wondering if this is a whole lot of money for more ambiguous information.
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Thanks for the link CP418. What is frustrating is that articles like that make me panic a little when it pushes a minimum of 10 years endocrine therapy for EVERYBODY.
"In sum therefore, given the long-term chronicity of endocrine disease and the well-established phenomenon of the emergence of late metastases (out to 15 years), a duration of no less than 10 years of total extended endocrine therapy (tamoxifen plus aromatase inhibitor (AI) therapy) is supported strongly by the existing data base, with a preference of out to 15 years for other than indolent/low-risk disease."
Yet you get this from Biotheranostics website:
"In clinical trials of patients who were recurrence-free at 5 years, only 3-5% of patients benefitted from extending long-term anti-estrogen therapies (Tamoxifen, Femara, Arimidex, Aromasin and others) beyond 5 years. That means that up to 5 out of every 100 women benefitted, and up to 95 did not."
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SusansGarden I though additional 5 years of AIs would help after year 10. Also as far as lifetime max. That may have been true before Obamacare but I don't believe there are no lifetime maximums anymore. Also if you are on a new plan then I think you start from 0 again.
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Lago... according to the BCI site. They are only talking about recurrence between years 5-10.
Maybe there are other studies that extend beyond 10 years? I was just talking about the BCI test and the relevance of its information to me.
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susansgarden - there is also no guarantee that you won't recur even while taking either type of anti-hormonal during years 5-10, despite BCI test results. My understanding of the test is that the second aspect of the result, the predictive benefit of continuing, is for taking anti-hormonals for the next five years only, most likely because they have no trial info beyond that since continuing aromatase inhibitor and Tamoxifen beyond five years is so new.The data for continuing aromatase inhibitors has even less confirmation than Tamoxifen, but I am seeing members here continuing to take them beyond 5 years with no testing done to indicate whether there is benefit, even in light of BCI's data showing a very small number of people who do - less than 6%. And, yes, the info is ambiguous - I am considered "high risk" for recurrence according to BCI, but what does that mean to me as an individual - there is already info showing that being node positive and Her2+ raises my risk with BCI testing, as does tumor size. I already knew that without spending $5400.
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That is another great article CP. Just yesterday we were discussing the PAM50 test on the research thread and it looks like it is a part of the BCI test.
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MA.17 Extension Trial - it appears this table shows for 10-15 years ending in 2015. (see table 3) Hopefully we can see some results soon! I was recommended to stay on any hormone suppression medication for a minimum of 8 years being higher risk with 1 positive node, grade 2, ki67 score of 20. I am just starting year 10 on letrozole without benefit of any of the tumor tissue tests because they were either not allowed for node positive or newer tests were not available. So I am certainly wondering what I will do at the end of 10 years at age 60 (dx at age 49).
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC368926...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC368926...
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2001224/
Farmerlucy - I remember when Constantine use to post here before he set up his own forum. Glad I found him again. He is very well knowledgeable and knows breast cancer research. I respect his comments about extended AI treatment.
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susan....simply put....my type of breast cancer, mucinous, is very rare. Two to four percent of breast cancer diagnoses are mucinous. For those of us who do recur, recurrence usually occurs "late" which makes it more likely that we will ultimately die from something else. My MO said that in my lifetime, it would be more likely for me to get a garden variety breast cancer. So, he wants me to be protected from getting a "new" breast cancer. That said, I have only found one person here in the breastcancer.org community who fit that description and NOT a single person in the literature that that philosophy applied to. The one person that I know presented with THREE different types and each type was more aggressive than the last. Very alarming and equally sad. Sooooo, because I am tolerating an AI, he wants me to continue...
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All this info is very interesting. I had an AI discussion with my MO in January. I asked her what she thought about me possibly continuing an AI beyond five years. She said at this point she isn't having me continue unless something came out saying it would be beneficial. Her thought was that after five years my risk of recurrence drops as low to zero as it can get. Her two main reasons were that my tumor was grade 3 and I'm Her2+ which makes my greatest risk of recurrence in the first three years. It's like those two things trump me being ER/PR+. I'm not sure I agree and I'm pretty sure I won't be stopping at five years. I am 90% ER/PR+. Anyone else hear this?
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