How Many are doing 10 years on Aromatase Inhibitors
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I had an oncologist appointment yesterday. I am coming up on 5 years since my surgery of August 3rd 2013. I wanted to discuss the 5 vs 10 year plan and my MO was leaning towards 5 years. She said 7 years at most as current research shows no benefit to over 7.
Recent research has shown that I received no benefit from chemo as my oncotype was 20 and despite two consults, both MOs encouraged me to do chemo. I did it with reservations and now have long term SEs. I do not want to make a mistake when deciding whether the continue the blockers over 5 years or under 10, accordingly I asked how long the hospital will keep my tumor. She said usually 5-7 years. Perhaps that BCI test would give further info? She was not a fan but offered it if I insisted. As to the ANA test she had never heard of it being used for BC but offered to review any literature I could provide. Ugh... if my tumor is going to be disposed of in a month, if it isn't already gone, I feel like I am running out of time.
Does anyone have info on ANA? Any thoughts for me?
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I would definitely ask for the BCI. I had a low Oncotype (12), but my BCI came back high risk for recurrence so I am going to stay on Arimidex for at least 7 years, if my bones and joints can take it.0
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Peregrinelady -- Did BCI or your doctor indicate why you received a high BCI score with a low oncotype? Is there any correlation with the tumor pathology? For example, was your ki67 high? For myself, I would find such a divergence mystifying without some deeper understanding.
I have been on the fence about doing the test for 2 reasons: 1) my former onc did not think it was proven technology and 2) tumors are heterogeneous and the "ugliest" slices have been used already for Foundation One, Claris and Oncotype.
But I would like to know the answer to the question: 5, 7 or 10 years?
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I am starting AI in July. My understanding of my BC is it is not aggressive but it's recurrence risk escalates after 10 years. (Oncotyoe 17). Anything can happen in the next 10 years in medical breakthrough, but I would want to be taking something as long as I canto reduce the recurrence risk when it starts to escalate after 10 years.
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Remember that the BCI gives two scores - prognostic and predictive. The prognostic score is based on your original tumor and the predictive is based on their clinical trials and follow up. I did 7 years of therapy and then the BCI and the prognostic was low but predictive high. I opted to stop. My Onco was 16 and my primary cancer was considered aggressive with a high, 30%, Ki67 and pleomorphic lobular. But 7 years is a good run and after 6 months of being off, I feel great! Will probably have this knee joint pain for life but...
My point - look for the two scores.
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Katcar, sorry I just saw your question. The BCI came back high and obviously I was confused. I even emailed the company and this was their response.
1) Oncotype Dx gives a 10 year risk of recurrence. When we say that they “focus” on 0-5 years, that’s because their performance is better in years 0-5 ( in published clinical trials). But when they give patients a percentage, it is indeed a 10 year risk of recurrence.
2) Regarding the patient wondering why her 9.1% was considered “High Risk” - The risk category is based on the cutoffs that we used in our studies. For BCI, the cutoff between high and low is about 4.8%. Whether a patient actually considers that “high” can certainly be subjective, though. For some patients, 5% seems high, for others it seems low. Regardless, the individualized percentage (and confidence intervals) are provided for the physician and patient to review. Per your specific question, for Oncotype Dx, the 10 year risk of recurrence cutoffs are at about 10% (between Low and Intermediate) and at about 20% (between Intermediate and High).
3) It will not be uncommon that BCI and Oncotype Dx give different categories for risk. We have shown this in published studies. The questions of “which is right” can get rather complex. I would encourage them, as usual to speak with their physician. And then if the physician has questions, he/ she can call Medical Affairs.
So, what I got out of that was that Oncotype is more for the first 5 years and BCI is for after that. The prognostic score actually says “risk of late recurrence (5-10 years). Consequently, I am going to stay on the meds for at least 7 years.
Hipline, thanks for pointing out the difference between prognostic and predictive. Both of mine were high.0 -
Has anyone done the Prosigna test for those node positive?
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Thanks for the clarification on the BCI test and for sending me their explanations. I am not even sure I will bother with it... I don't have enough of the ugliest tissue remaining to test, and my MO just told me that I am on the 7 year plan. Only 3.5 more to go, sigh. My MO said I could switch back to Tamoxifen if I want. I may do one more year on Arimidex and consider Tamoxifen again depending on my bone density tests. Maybe I would have a better time on Tamoxifen the second time around now that I am definitely post-menopausal.
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My BCI test came back high risk but high benefit to the blockers so looks like I am on the ten year plan. The results are consistent with my Oncotype test so that gives me high confidence in my test scores. Staying the course but hope my hair holds out. I was soooo looking forward to getting off the blockers and all the meds to counteract their SEs but could be worse I guess. High risk but no benefit would not be an ideal scenario either. So it goes.....
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Not broken, what was your Oncotype? Mine was 12, so was surprised at high risk with BCI.0
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Perigrinelady, my oncotype was 20 so that put me at a 13% chance of distal recurrence and then chemo brought it down another 1-3%. My BCI has me at 11.3%.
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Interesting, my BCI says 9% with extended therapy, but on the second page it says 16% so I am totally confused. I might call the company and ask for clarification. Will post here if I find out any answers.0
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My onc and I discussed the BSI at my last appt, we'll be scheduling it at my next appt in January. She did tell me a little bit about the scores. She said I'll get 2 scores. One will be my chance of a later reoccurence. The other score she said is an indication of how much the arimidex is lowering my risk of reoccurence.She gave the example that sometimes someone will have a low risk of late occurrence, but their second score indicates the arimidex is helping them and that even though their risk is on the low side for a reoccurence, staying on the arimidex would lower it further. If that was the situation she said we'd discuss whether it was worthwhile staying on it vs the effects it was having on my body (like risks of fractures from bone loss).
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Thanks, Puffin! That explanation helps me to understand my report.0
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Yes, my report on page one "Risk of Late Recurrence" is 11.3% which was reduced from 20.7% with extended endocrine therapy or a reduction of 67%. My MO wants me to come in to discuss the report but unless I am missing something it seems pretty straight forward. I will post after my visit with her if she has any thoughts or further insight.
That is why staging is pretty much outdated. I am stage 1A but have a 20.7% chance of late recurrence without hormone treatment after 5 years? I know stage three gals with better odds.
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MO appointment tomorrow to go over the results. I wish we could have just done it over the phone but the nurse said she wanted to see me to go over these BCI results. Anyone else with high risk doing the biophosphonates preventatively? I asked her in the past and she said latest research shows no benefit when it comes to mets and they carry SEs and risks of their own. Thoughts or insight? I will revisit this again with her tomorrow.
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https://www.asco.org/practice-guidelines/quality-g.../24471
This is a link to an article from the American Society of Clinical Oncology regarding bisphosphonates and breast cancer.
There's a lot more on the internet, too. Just google "bisphosphonates breast cancer" and you'll find an abundance of research that reports a reduced rate of bone mets with bone-modifying agents. Yes, there are risks with bisphosphonate treatment, but it's another weapon to help keep the monster unconscious and locked in the cave.
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I am new to this thread but my search of bisphosphonates brought me here. I have finished surgery, chemo and radiation but am continuing on Herceptin and just started an AI. I got a baseline bone density test but haven't seen results yet. I asked my PA about getting bisphosphonates for prevention and she said that insurance typically doesn't cover it if bone density isn't an issue. She was pretty frank: "they'll cover it once the bone mets appear, but so far, not for prevention unless your bones are thin when you start AI"
Has anyone here been able to get them covered? Once I know my density results, I may ask for a prescription and have a couple of go-rounds with insurance. I may just have to pay for them myself.
I'm interested in anyone else's experiences. Thanks.
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My Mo pretty much said the same thing to me. I was surprised since there are so many women here on biphosphonates. Maybe some of them will chime in.0
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I just got in from my MO and so here is my mini rant. She said the biophosphates DO NOT prolong survival which baffled me. She said the science for bone mets has advanced so that prevention is not an issue. Huh?
As to the BCI test she said she does not like the test as it says nothing. She said she only did it because I insisted. That is soooo untrue. All I did was ask about the test and how long my hospital would hold onto my tumor sample. She said 5-7 years so I asked if her office could call the hospital to hold my sample in case I wanted the BCI test or in case a better test came along. Next thing I got a call from San Diego and my sample was there for testing. Anyway, my MO said the Prognostic may have some merit but the Predictive is just a guess and nothing more. There is NO test or science that can tell you if you are benefiting from hormone blockers. Ugh...I am so confused and annoyed. WTH? maybe I will call Bio Theranostics.
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sbel, I had downloaded tons of papers on biophosphates for her to review but she was not interested and she said while initially the research looked very promising it was proven to not prolong survival so does no longer perscribe preventatively. In my mind it seems like cancer would set up in the weakest part of the body. I am osteopenic and have arthritis and degenerative disc disease and spondiosis. I would think keeping these bones strong could only ward off the devil but she adamantly disagreed and seemed annoyed at my questions.
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https://www.breastcancer.org/research-news/20140128
This was the study that inspired me to ask my PA and it was presented back in 2013. And this later study showed that all bisphosphonates reduced risk the same (apologies if these have been referenced in this thread already)
https://www.breastcancer.org/research-news/all-bisphosphonates-reduce-risk-the-same
It doesn't make sense to me that if doctors (and insurance companies) know that AIs cause bone thinning but bisphosphonates counter that side effect, that there would be any hesitation to prescribe them. Wouldn't that save everyone money and lives?
Maybe there have been more recent studies to refute this.
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I am a black and white person and don't do well in gray areas and inconsistency makes me insane. Why do all these MOs have different ideas and treatment plans? This has been a source of frustration since my dx and all treatment thereafter. Now I am interested in these biophosphates. I am osteopenic and others who have better dexa scores than I are on the biophosphates or have no osteopenia and yet are prescribed them preventively for bone mets. Is this normal with health issues? Are there no Standard of Care or is all this science open to interpretation? Ugh... makes me crazy. Wish I could go to the best hospitals and best doctors in the country and just turn my care over to them.
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Just published on my nursing listserv today, here are the new recommendations from the National Institute for Health and Care Excellence (NICE) in England. Bullet #2 addresses bone-modifying drugs.
"Updated guidelines on the diagnosis and management of early and locally advanced breast cancer in England have been issued by the National Institute for Health and Care Excellence (NICE).
Among the main recommendations are that:
- Postmenopausal women with ER-positive invasive breast cancer who have been taking tamoxifen for 2 to 5 years and who are at medium or high risk of the disease returning should be offered extended hormonal therapy with an aromatase inhibitor.
- Postmenopausal women with invasive breast cancer that has spread to nearby lymph nodes or who have a high risk of the cancer returning should be offered bisphosphonates alongside their chemotherapy, reflecting evidence that bone-modifying agents improve disease-free survival and overall survival.
- Women who are having a mastectomy should be offered immediate or delayed breast reconstruction options whether or not they are available locally. The benefits and risk of these options should be discussed and healthcare professionals should be aware that some women may prefer not to have breast reconstruction surgery."
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I got my Dexascan results yesterday and compared to one in 2015, I'm showing osteopenia (3% reduction over time). Called the PA and asked "Now can you prescribe a bone-strengthening drug (bisphosphonates) to prevent recurrence in bone?" For this next part, understand that the PA and I both understand and agree that the evidence shows bisphosphonates combined with AIs will prevent/reduce recurrence, but with a wink, we know she has to "follow the rules" of her employer and standards of care.
What she said was basically: the FDA guidelines approve bisphosphonates for osteoporosis and preventing fractures and bone issues. So, according to these guidelines, I would be prescribing a drug that could cause side effects (jaw necrosis among them) that are more risky than the standard of care for osteopenia, but not osteoporosis. (The standard of care for osteopenia is calcium/Vitamin D supplements and weight-bearing exercise). In other words, according to conventional guidelines of prescribing bone-strengthening drugs, she would be putting me at "undue risk" of side effects for the sake of treating osteopenia. Obviously, the FDA guidelines haven't caught up with the breast cancer prevention guidelines (can't remember which BC organization this was, but breastcancer.org has posted a video specifically recommending asking your doctor about adding bisphosphonates for bone mets prevention). So she was happy to prescribe them but warned that insurance may not cover them because of the FDA guidelines. She even has a "favorite" bisphosphonate, alendronate (looks like a generic), that you take just once a week. So we hung up, she called the pharmacy and within 2 hours, I had a text from my pharmacy that my prescription was ready (the pharmacist is an eager guy; my son went to high school with and he knows me). Haven't been to pick it up yet, but usually if there's an insurance problem, (like, they can't dispense x number of pills in a 90-day period), they usually call me first. So I gotta believe the insurance was NOT an issue.
Because of the jaw necrosis side effect, we agreed that I would get to my dentist (haven't gone since DX), get my teeth cleaned and any cavity/surgery done before starting the alendronate.
I am very happy I have this opportunity to further reduce my risk of recurrence. I'm guessing that in a year or two, bone-strengthening medication with AIs will become a standard of care and we don't have to sidestep guidelines. What I continue to wonder through this whole adventure is: how unfair it is that I may have a better outcome than others because I found the latest research and studies on this website, I'm persistent (possibly annoying) with my doctors and have good insurance and access to an integrated breast cancer practice in an urban area. How many women are suffering because of this unequal structure of our medical system? And not just with respect to BC. I am overwhelmed by everything I've seen in the last year in infusion centers, the radiation waiting room, and outpatient surgery centers. I even feel guilty sometimes because I only have to work one job that allows me to pay monthly gym fees and buy fresh produce. Argggh, I will stop now, count my blessings and say prayers for those who aren't as lucky as I am. I'll even pray for those fortunate, unknowing people who will never have to experience this.
Thanks all, for being here and understanding.
Mindy
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In 2013 I started with Prolia, then was switched to Zometa during most of my treatment. Since I've been on AIs, I've developed osteoporosis (my mom had it, too), so they recommended I stop the AIs at 5 years as it will domore harm than good. Very scary, but I don’t want fractures in the future. A bone specialist prescribed Fosamax for me. It seems there are no clear guidelines and too many studies are flawed or refuted after publication. Never an easy decision and so frustrating!!
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I am 52 but was still getting monthly periods. Because I have ILC and a micromet in a sentinel node, doctor is skipping over tamoxifen and we are doing ovarian suppression + AI + Zometa. I asked if I should have a bone density scan and she said no need because I am still premenopausal so should not have issues now.
I am pleased to have a chance at reduced bone recurrence risk from Zometa. Yes, worried about the jaw necrosis risk as I have some teeth that are sensitive but I cleared with dentist and am going to have her monitor them closely and frequently.
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My oncologist is recommending that I stay on my AI until 7 years (was on Tamoxifen for 3 years and have been on an AI for 3 years at this time) and then we'll see what the research shows. I have not had a lot of side effects. Did have the Breast Cancer Index test at five years out which should I am at low risk for recurrence and am a low responder to the AI. My oncologist felt that "low" does not mean "no" and as long as my bones are all right (have osteopenia and receive Prolia every six months with DEXA scans annually) that it would be reasonable to continue my AI to the seven year mark. After that, "we'll see".
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I was dx'd 01/2012. (Stage 1, Grade 3, E/R, PR +, HER-, Onc. DX score 28) Have been on anastrozole since 7/12. After 5 years, my mo said studies indicated less chance for recurrence if taken for 10 years. Six months later, she said different studies said it made no difference. Since my S/E's are minimal I decided at this point to be on the 10 year plan.
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6 years for me and have been told my a BC nurse to stay on it for 10 years as studies suggest it looks like it might be beneficial.in stopping recurrence, My onc said no studies to date indicate any advantage beyond 5 and wanted me to go on Tamoxifen, from what I have read AI are more protective at preventing recurrence than Tamox. Never sure what to believe.
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