How Many are doing 10 years on Aromatase Inhibitors
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I am positive I will be on AI for 10 yrs.
Just picked up 90 day brand AI for zero copay. thank god for the fact my BC blew up beg of this yr which enabled it and maybe I hope I can pick up the next one the same before yr end. Otherwise I have to take advantage of Eagle Pharmacy $30 per mo for brand AI
I am positive I wont have hot flashes. I am hoping for less joint pain as possible. Will find out soon
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Haven't posted for awhile but thought this link might be of interest: https://academic.oup.com/jnci/article-abstract/109/10/djx041/3114122/Treatment-Restarting-After-Discontinuation-of?redirectedFrom=fulltext
Go for my DEXA scan tomorrow. My fingers are crossed.
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Does anyone know what happens to our estrogen production after 5 years on an AI? The nurse practitioner at my MOs said that it's hoped that our bodies would stop making it after being deprived for 5 years.
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Hi Suz-Q, yes, everyone continues to produce estrogen until death, that's the reason why people with estrogen positive breast cancer remain at risk for recurrence the rest of their lives. Rather surprising a nurse practictioner would not know that.
Regarding the MA-17R study so many have quoted (the one that showed 10 years on Letrozole resulted in fewer recurrences) there were several studies published after that one that contradicted the results. The picture is rather murky, so it looks like it's best that patients have an in depth discussion with their MO/provider about the benefits and risks specific to them. Here's a link to a summary article in ASCO on the 3 studies that did not show benefit: http://www.ascopost.com/issues/december-25-2016/be...
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It looks like I will not be continuing AI's after my 5 years is up next June. I had the BCI test which showed low risk. Good news, I suppose, although I wasn't surprised considering my low Oncotype score. The nagging doubt in the back of my mind tells me otherwise. My tumor was locally advanced with a positive node. My initial experience was nothing short of a disaster from the biopsy through my first 2 surgeries. Although my outcome was good after I finally got to the right team, it took me a long time to recover from the trauma. Mostly I'm happy to be stopping the AI's and looking forward to less side effects. But I will always wonder if I've done enough. I suppose that's normal.
Best of luck to everyone!
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@ Margo thank you for posting the link. I don't have enough background in statistics to read the results and I suspect the devil is in the details - as usual.
"In the NRG Oncology/National Surgical Adjuvant Breast and Bowel Project (NSABP) B-42 trial, 5 years of letrozole therapy after 5 years of endocrine treatment did not significantly improve disease-free survival or overall survival but did significantly improve the breast cancer–free interval event rate and distant recurrence rate."
"We did see a major difference in the reduction of distant recurrence, however, and also in breast cancer–free interval events (which includes recurrences of breast cancer and cancers in the opposite breast), with extended letrozole,"
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I am curious as to whether there is any consistency demonstrated between Oncotype and BCI scores, i.e., parallel results. It would seem logical that there would be. Does anyone know? Thanks in advance.
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Hi Margo, all I can tell you is that my oncotype was 12 and my BCI came back high risk. Needless to say I was upset. I even contacted the company and they said that this often happens. My oncologist just shrugged and I don't think even knows anything about BCI. My first onc ordered it (without me knowing) right after diagnosis, when I had just started to come out of my depression from being misdiagnosed. Then he hit me with the BCI results and I promptly went right back down the rabbit hole. From my layman's investigation (mainly on this site) I think oncotype is more predictive for the first 5 years and BCI for after 5 years. If anyone knows differently, please enlighten me.0
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Also, I didn't have chemo based on oncotype results and was told that I didn't need radiation by three different RO's, so I felt like maybe I didn't do enough after getting the BCI results. Now, I just try to exercise and avoid stress and hope for the best.0
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I just had the BCI test done. I was actually doing it to get some added piece of mind about my prognosis. I got just the opposite. I thought for sure based on my Oncotype of 11, ER/PR both >99%, HER neg, clean margins, no nodes, no LVI, KI-67<5% - that I would come back low risk and high benefit. NOPE!!! High riskLow benefit.
My score was 5.2 which barely puts me in the high risk category. 5.1 to 10 is considered high risk - and LOW benefit of hormonal therapy beyond 5 years!! I don't see how that can be given my stats!!! Discordant results to say the least. I got no peace of mind whatsoever from doing this test. I'm hoping maybe I'm close enough to the low risk cutoff that it explains why I have low benefit - but I will never know for sure....so I will plan to stay on for as long as I possibly can.
I had a friend who did it also. I don't know all her stats. But her tumor was 1cm, Oncotype 10, lumpectomy and radiation, ER/PR+, HER2 neg. Her score came back 7.1 out of 10 (high risk), but high benefit of extending hormonal therapy.
Maybe this test still needs some refining.....???
Anyone else out there with similar results?
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Also, just an observation, there seem to be more high risk results (despite supposedly "low" Oncotype scores). Are we now being under treated?!!! Should we be doing chemo in the hopes of really eradicating any rogue, now seemingly high-risk cells????? Too late for many of us to do that now. Maybe BCI needs to be run with Oncotype for additional information at the time of treatment decision. Just thinking out loud....nothing I can do about it now
They go from over treatment to now potentially under treatment!! I feel like a lab experiment.........
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I also had the high risk, low benefit combination on the BCI test. This group only represents about 10% of patients who have the test done. The test looks at specific pathways using original tumor material, so I also interpret it to mean I was receiving low benefit all along, during the first five years of AI therapy. I do wonder if the low benefit contributes to the high risk, but I have other factors that make me high risk, and this is consistent with a high risk result on Mammaprint. My oncologist has asked me to remain on letrozole, as we agree that low benefit isn't zero benefit
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Hi SpecialK,
Thanks very much for your reply.
I guess I am just at a loss for what exactly makes me high risk when I've been given the impression all along by my doctors that I am low risk. I find it very disconcerting to say the least. But I will plan to continue for the 10 years, unless some of the current side effects I'm experiencing - joint/muscle pain, osteopenia, and high cholesterol/LDL, vaginal atrophy, UTIs, etc, etc.....make it impossible.
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Here is some interesting info regarding how BCI intersects with OncotypeDx scores:
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Thank you SpecialK.
Both interesting articles and back up exactly what my concerns are. I'd say I'd discuss with my doctors but there's nothing they can do at this point either. That ship has sailed - everything seems to hinge on the slim chance that the letrozole will keep me safe 🙏🙏🙏
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Thank you all, PeregrineLady, Special K and Kath1228; this is quite concerning to learn of these disparities in risk categorization between the 2 tests. Science needs to do a much better job of sorting out the data or getting better data. I tend to agree with Dr. Patricia Ganz, who writes for this website and is quoted in one of the Medscape articles about the MA-17R study; she said she hopes they can further sort out the data collected so clinicians can pinpoint the people who would really benefit. Meanwhile we are all left to roll the dice.
I'm going to try to forget all this now and watch some playoff baseball
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Exactly what has been going through my mind, Kath! My stats are similar to yours, but a little worse. 100% ER and PR, KI-67 - 17% and I had micromets in one node. We are both grade 2, so I wonder if that is significant. BCI said high risk, high benefit. I don't understand the high risk, low benefit. Do you keep taking the drugs if there is a low benefit? The only comfort I take is that the Oncotype is NCCN approved and BCI is not. I guess only time will tell. We have to live our lives either way and try not to stress about this. Good luck on that with all of us
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I'll be doing my BCI test at the end of the month. My MO (and my out of state MO friend) both say this test only tells you the benefits for years 5-10. And both said the accuracy of the test is 99.98%. And both said even if the test comes back as high risk (I had a fairly low Oncotype score of 15), don't feel that I should have done something different. They explained that the Oncotype is very predictive of the first 5 years so if chemo isn't indicated then it won't do any good for the 2nd 5 years and to think of treatment as 2 separate plans. They think it's one of the best tools recently discovered for the treatment of BC.
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Plady- That was what crossed my mind too. I haven’t had the BCI test. My onc felt that since it wasn’t standard of care, one could not rely on the results. I thought I would have liked to have it done, but now I’m not so sure. I’m gonna go with ignorance on this one. It will be very interesting to see how these tests evolve. Xoxo
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I haven't posted in a while but saw some updates to this topic. I completed 10 years of Letrozole and although not easy I was determined to follow through as recommended by my oncologist.
Peregrinlady - my stats are similar to you 100% ER+, PR+, Her2neg. IDC stage 2A, grade 2, 1/18 nodes, Ki67 was 20%. I was dx in 2006 age 49 for lumpectomy and before all the tumor genetic testing was NOT available for us. My 1 positive node automatically sent me for chemo 4 DD A/C, 4 DD Taxol, radiation treatments - started Tamoxifen but had hard time on it. I got an ooph to switch to Letrozole. Joint pain and osteopenia issues which have been an ongoing treatment first with Zometa and then switched to Prolia. I hate this disease and the treatments too but so far I'm still hanging in there. I did what ever I could to benefit my survival and improve my QOL. Healthy eating, regular exercise and some supplements are my norm now.
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cp418, thanks for sharing. Good to hear from people that have completed 10 years and lived to tell about it! It sounds like you did everything possible to stop it in its tracks. I only hope that current thinking with the Oncotype scores doesn't turn out to be under treatment, but know I should feel fortunate that I didn't need chemo. Time will tell, and of course who knows what the conventional wisdom will be 8 years from now when my 10 years is up!0
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I thought I would post another 10 year success story, not my own, but a long time friend's. She'd had early stage with negative nodes the first time around and it was treated with rads. Less than a year later a mammogram showed 2 tumors and one had already gone to lymph nodes. She had a lumpectomy, chemo for 6 months, rads and then went on Arimidex. Her BS told her to stay on it after her five years were up, although Oncotype was not around then, her mother and older sister had both had BC so he thought with her rapid recurrence and family history she should stay on it 10 years. She passed the 10 year mark about 2 years ago and is doing great, a happily retired nurse. She told me she did have SEs along the way, but with her history she was willing to deal with it to stay NED.
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Great story, Margo! I have no problem with 10 years if I can be happily retired some day.0
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had my 6 month check up...7 1/2 years into treatment. Based on my BCI score (2.7)...MO thinks I can quit treatment if I want to. However, because I have little side effects, he thinks I should consider continuing treatment for another 6 months to a year. I seem to recall him telling me that the last time we met.... It really boils down to the numbers and side effects...my July bone density scan came out PERFECT and he claims I look good. Soooo...I guess the chicken inside of me thinks overtreatment is the way to go for now..
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Had my 5 year mark! Have some bone loss with AI - onc says wants me to stay on AI (femara) for another 5 years since my dx includes Her2+. What questions /tests should I ask him about his decision to keep me on Femara. Is there an AI that does not effect the bones as much as Femara?
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Hi dventi,
One of the results of the 10 year study (MA-17R) on Letrozole was increased fractures, so you may want to ask your doctor about getting regular bone scans so you can keep an eye on that and start using whatever bone loss drugs they recommend. All of the aromatase inhibitors have the same effect on bones, i.e., shutting down estrogen which leads to bone loss for the majority of people since estrogen is needed to create new bone. Also keep an eye on your cholesterol which can go up without estrogen.
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What is considered regular monitoring for bone loss - once a year or every two years? I suppose it depends on your insurance.
I won't be continuing with AI's due to my low risk score. Plus I have osteoporosis, high cholesterol, and severe vulvodynia. I'm hoping that will all change once I'm off the AI.
Is anyone here with osteoporosis using Zometa beyond the recommended 3 years?
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MargoChanni - thank you - bone loss drugs - concerned as I am sure there are side effects with these drugs as well..........and the beat goes on.
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Those are good links on the BCI test. On the topic of low oncotype/ high BCI - Remember that oncotype says whether or not you should do chemo. It assumes you are doing hormone therapy. So its determining what your treatment should be. I don't know that much about BCI, but I could see that since ER+ BC recurrence risk does not reduce as much as ER/PR- after five years, you can have a low oncotype but high risk of 5 to 10 year recurrence.
I recurred at two years, and am four years now post recurrence, which means I will most likely be on the 10-year plan out of fear if nothing else! My doctor said we'll see what info they have next year, but right now she feels like she wants me to stay on for ten years.
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Bc101....I’m in Canada and have a bone density test every year.
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