How Many are doing 10 years on Aromatase Inhibitors
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Anymore news on BCI since San Antonio? I see my MO in April (on 6 month schedule) and she was waiting for more info. I haven't caught up with this thread but saw one person here that got BCI. Woul love to hear more. (Test determines if post 5 year risk high enough to get help from further estrogen blocking.
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Hi, Quinncat!! My ten year anniversary taking Aromasin will be this April!! I see my onc then and will discuss what is next!! I am 11 years cancer free so far!! She wantS me to have another bone density scan and a complete blood work up
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Kindergarten -that's interesting your MO would give you an additional 5 years well before this whole idea discussed (at least I only became aware of it in last couple of years)
Btw-congratulations!!!
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So since this ten year plan is new ( I'm on Letrozole), there must not be studies on what ten years on AI would do to us? It doesn't seem good common sense to cut the body off from Estrogen for ten years. That includes the brain.
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I discussed this with my MO. She said that even if the 10 years were up it's what happens after the 10 years. There just isn't enough data or the study would have let some info out. From what I have seen there is no news, good or bad.
But my MO wants me on it for 10 years. My 5 is up in April. We will be discussing. I might just take one year at a time.
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Thank you, Quinncat!! I do remember my first onc telling me back in 2005, that I could be on it for 10 years!! I have had 3 oncs since then because of moving!! My onc in Chicago wanted me to stop after 7 years, but when we moved to CA, my onc here said, because of bi-lateral breast cancer and lymph node involvement, she wanted me to stay on it for ten years. I am glad I did!!
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My blood lipids are fairly high anyway--but with an HDL of 95 (at last count) and BP under control, my primary’s not worried about LDL so long as I stay low-carb and keep my weight below 200 (and preferably, lose some more). My most recent Framingham score was 4 (which means a 4% chance of a cardiovascular “event” over the next 10 yrs), so I doubt he’d put me on a statin (which gave me muscle pain the first time we tried it). I will see my MO in a couple of weeks, and I assume she’ll do a full lipid panel as well as CBC and chemistry. I will mention my primary’s aversion to bone-strengthening drugs in light of my GERD but that a bone specialist says I have to do something beyond exercise & minerals, and that research shows Prolia can inhibit recurrence. One shot probably wouldn’t do any harm past a few days of feeling “flu-ish.” Wondering how often she’ll recommend DEXA scans--I suspect the results might affect whether to keep me on AIs longer than 5 yrs.
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chisandy I have issues with gerd. Tried Fosamax for a week and it started up. Switched to Prolia. It's a shot 2x a year. I have had no SE from it. Have had 3 shots already. Coming up on 5 years n April on ESD. My MO wants me on it for 10 years due to tumor size. I'm taking year by year after this April. So far not overly impressed with Prolia's effect on my spine but will know better in 1.5 year
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Is there an issue with Dexa scan more often than 2 years which I believe is the standard? Seems a long time to find out if anything is working for the density issue. Or, maybe it just takes that long for any change to show up?
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Patoo, there are no problems that I am aware of with a yearly dexa, with the exception of the insurance coverage. I've been having one yearly since starting on the AI. My GP writes me an Rx noting that I'm taking Arimidex. That qualifies me for provincial health coverage for the test. (I'm in Canada.)
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My oncologist tested me initially every year. Once I was diagnosed and being treated with Prolia she switched to every 2 years. Your bones don't lose density that quickly…
BUT being on an AI will speed up the process so that's why she tested every year before I was treated with Prolia. What ever drug you take to build or slow down osteoporosis will work slowly so every 2 years is appropriate.
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The Breast Cancer Index (BCI) has some excellent information on the test and the benefit of continuing AIs. Only 3-5% of women benefit by extending. Of course, I am one. Has anyone else taken the test?
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No but I will talk about this at my appointment this spring (when the 5 years are up). I have a feeling my tumor size will automatically put me in the yes column
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I hadn't heard of the BCI Index and I'm in year 6 of Arimidex. I've developed osteopenia which initially improved with Prolia but over the past year worsened again. According to my MO, I'm definitely on the 10 year plan and I'm actually afraid to stop it. But if there was a test that would help to define my risk, I would definitely be interested! Unfortunately, the BCI Index has only been studied for prognostic validation in node negative women. Here's hoping to future validation for node positive folks!
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When does everyone have the BCI test done? Do you wait until you are close to your five years or can it be done at any time? My MO told me she only recommended five years at this point. She said there isn't any data showing ten years is better. The risks from these drugs can outweigh the benefits. Her other reasoning was that I had a grade 3 tumor so my recurrence risk is the highest in the first three years. I don't know that I feel comfortable going off in five years. I'll probably stay on it as long as I can tolerate it and my bones stay healthy. I'd definitely be interested in having this test done to see if I would also benefit.
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Mammato if my tumor wasn't so big my MO would have recommended 5 years too. No nodes and tumor under 5cm puts you at a lower risk for recurrence. I would have this discussion with your MO. But I tend to agree with your MO with the highest risk for us is the first 3 years for fast growing tumors but the risk for us hormone negative isn't gone after 3-5 years.
I'm still considered high risk due to tumor size.
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I really think that anyone who is taking AIs should visit the Breast Cancer Index website and read the information thoroughly. I had to read and re-read. The website answers all of your questions and will help you make an informed decision about the benefit of continuing the AIs. My oncologist made sure that I had the test at year 5 and it did prove that I was one of the 3-5% of women who benefit from continuing. It has already been backed up by several large studies. I love science and love the science backed research.
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Ouch, I just read the information on the Clinical Trials which states " As mentioned earlier, roughly 20% to 40% of patients with ER+ breast cancer eventually develop distant metastases and half of these events occur 5 years or later after diagnosis of the primary tumor." This is scary.
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So Aug242007 that means 10%-20% develop distant mets. But I'm sure there is more to this.
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Hi, all - this is all scary stuff, and it hit me tonight how grateful I am for this site and for y'all and your honesty. I have my MO appt Thurs and have lots of questions! I am 8 months on Arimedex, and the side effects have calmed down. Thankfully. So much new info coming in is a good thing and you make it easier to face. ✌️❤️Lind
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Somewhere I read that there was no correlation between the BCI score and the Oncoscore. High Oncoscore doesn't necessarily result in the BCI score recommending 5 more years of AI's. Of course, the Oncoscore does not take into account the initial size of the tumor, but does assume no node involvement. My MO was not going to recommend anything vis a vis BCI until after San Antonio. I see her in April, so will get her ideas then. Heading into year 5 this coming August. I do like the idea of taking a test and that will tell me the likelihood of recurrence after year 5, though.
Does anyone know if insurances generally cover BCI
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From the BCI brochure:
BCI Indications for Use and Limitations
BCI provides a quantitative assessment of the likelihood of distant recurrence in patients diagnosed with ER+ node-negative breast cancer, and prediction of likelihood of benefit from extended (>5-year) endocrine therapy in patients who are recurrence-free after an initial 5 years of adjuvant endocrine therapy. Treatment decisions require correlation with all other clinical findings.
End of Quote (I see BCO still rough with the Apple products-arghhhh)
So in the quote above, I tried to bold the "and" in the sentence. It seems with this "and" in the sentence, and given the higher % recurrence rates of ER+ past 5 years, than the 3-5% who get an indicated benefit from BCI for taking AI's past year 5, that Leaves a significant % of us that will have a recurrence after year 5 that won't be helped by additional hormone blockers. Now, my Oncoscore had my risk % given for 10 years, and it wasn't a happy number in the world of possible scores, so if I'm reading this right, wouldn't one want to be in that 3-5% that would benefit from additional AI's?
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Lately I'm seeing a lot of talk on the discussion boards about BCI. But what about the millions of us whose tumor samples are long gone, like me? Is this only for those recently dx'd, who knew about this analysis beforehand, and who have a sample to use?
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claireaz - I'm like you and I feel like I'm "winging" it. I was dx in 2006 when Oncotype just became available and widely used, however, because I had 1 positive node I was NOT allowed to use that methodology. The following year they lifted the "ban" and allowed patients with a positive node to be tested. I had already completed dose dense AC/T by then. Next came all the debates about benefit of Tamoxifen vs AI for premenopause patients with ovarian suppression (Lupron or ooph). I referred to those treatment plans as "McChemo" because you could tell automatically from someone BC signature exactly what they would be recommended for their pathology. It seemed I was always ahead of the recent published research and articles trying to find my way in the "dark". I did switch MO a few years ago at my 5 year mark on Femara and he did recommend to me to try to stay on AI for at least 8 years. Again - research was still pending for those of us going beyond the 5 year mark. IMO with my hormone dominant BC I believe I probably got the most benefit from that treatment than the chemo I received. Now I see some patients with additional tests available and who are single node positive are avoiding chemo. Or they get to take TC and avoid Adriamycin. I don't regret getting chemo (can't change the past) but I sure wish I had avoided Adriamycin - I had a horrible AE with severe GI problems. So I'm still winging it with Letrozole.....
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I was under the impression the "tumor" and/or breast goes in the vault at the hospital?
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Yes - that is true but I was past the 5 year mark. In addition, I had signed up for a breast cancer study where I gave a blood sample and permission for access to my tumor tissue. At this time I would not be surprised what the status is on "tumor" sample - if any left or if it available. The hospital where I was treated had previously lost some of my CT scans at some off site storage facility incident. They also would misplace my patient folder "some where between floors" when I did follow up visits. Another reason why I switched MO a few years back.
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cp - I'm with you on the winging it part. It's frustrating. Like you, the Oncotype was not available for us node-positive types till I was done with treatment. With one positive node, I was in the dreaded "grey area" on whether the benefits of rads outweighed the risks, with no definitive studies either way. And now the studies are still pending about whether 5 or 10 years on AIs is better, and the BCI is limited to node negative types.
After consultations with my MO, I went off AIs after 5 years. Two and a half years later, so far so good. I had every s/e in the book with AIs, with a significant negative impact on my health and QOL. Since I went off of AIs, my BP is back to normal, my lipids are back to normal, my bone density has gone from osteopenia to normal, and my joints are so much better!
Like so many other decisions we have to make in the absence of definitive studies, each of us has to go with what makes us comfortable.
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NatsFan - I'm thrilled to hear your AI side effects reversed when you stopped taking it!! I've been dealing with the exact same issues you described and struggling to stay off more medications - statins or BP meds. Dexascan coming up in a few months and I'll hear about my osteopenia status. I don't remember what "normal" feels like anymore but so far I've tolerated my situation. Fingers and toes crossed for whatever the future throws our way.
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Natsfan,
I have just completed 8 years on Femara and have to question how much longer I can tolerate all the side affects. My biggest problem being hip pain when I walk and my bone density plummeting. I have been advised that they want me to at least take something for 10 years and are saying I might be best to switch to Tamoxifen for the remaining 2 years if I can't tolerate any more Femara. I am scared to stop the Femara as I feel it is giving me a better chance to say recurrence free.
Can I ask, when you stopped Femara, was there anything in particular that you did or took that helped your bone density to return back to normal.
regards Ched
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http://www.breastcancer.org/research-news/prolia-r...
aussieched - have you received Zometa or Prolia? I had Zometa infusions in the past with minimal bone improvement. My MO recently switched me to Prolia injection (again per my research and request). Sadly here is another situation where now "experts" are recommending this bone preventive care prior to patients actually developing excess bone loss while taking AI.
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