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Completed 10 years anti-hormonal: now doc rx evista????

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claireinaz
claireinaz Member Posts: 679

Dear all,

I just finished a decade of tamoxifen/arimidex and finally exemestane. My current oncologist, at our last meeting, now suggested I take Evista, since I'm still considered high risk for breast cancer. I thought I'd be celebrating completing 10 years of AIs, and now I'm looking at taking them BEYOND ten years.

1) has anyone gone beyond 10 years with AIs?

2) if so, any links to literature that suggests high risk (stage 2, 6/11 nodes +, etc.) benefits from going more than 10 years with an AI?

3) What do you all think?

Claire in AZ

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Comments

  • malebreastc
    malebreastc Member Posts: 89
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    I took for 14 years and was doing well, was asked to stop and 3 years later have a recurrence, I wish I had continued, that is my personal opinion. Hope it hrlp

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    Your doctor should have access to that information. She wouldn't be prescribing it otherwise!

  • homemom
    homemom Member Posts: 830
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    Ugh. I was just convinced to continue on AI for three more years (just finished 7). Is this my future? Interested in what answers you get.

    Still better than the alternative.

  • salamandra
    salamandra Member Posts: 736
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    I had a lower risk cancer than you and I'm only 3.5 years into treatment. But I'm hoping to stay on anti hormonals for as long as I can reasonably tolerate them, or until we get a lot more research about long term outcomes with and without them. 5/10/15 year outcomes may (or may not) be all well and good for people diagnosed in their 80s, but for those of us diagnosed in our 30s and 40s... to me at least, it seems unwarrantedly optimistic to rely on a single 10 year course for the rest of my life, which would have me coming off them at around the time I could expect to enter natural menopause - a time in life that is very high risk for new diagnoses.

    However, I don't think evista is an AI. I think it is a SERM, like tamoxifen. It is sometimes used for prophylactic care for post-menopausal women who are high risk who have never had cancer, and I think it has a better side effects profile than either tamoxifen or AIs, including maybe some benefit for bone density? (I am not an expert, but I ended up doing some research on my own on alternative SERMs when I couldn't tolerate tamoxifen).

    I do wish doctors were better about explaining their rationale, and you should totally bug your oncologist until she clearly explains to you the evidence and reasons for this recommendation in a way that empowers you to follow her thinking and make an informed decision. On the face of it though, it seems very reasonable to me.

  • monarchandthemilkweed
    monarchandthemilkweed Member Posts: 151
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    this is very interesting to me. I am supposed to anti hormonal a for 10 years. I almosthave one year completed of tamoxifen. Headed for a hysterectomy soon at which time I’ll go on a different drug. I was diagnosed at 44 so I’ll be about 54 when I complete the ten years. At which time I anticipate being nervous about coming off these drugs. So I’d be very open to continuing longer or another drug.

  • claireinaz
    claireinaz Member Posts: 679
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    Hi Salamandra,

    Re your claim that evista isn't an AI--I get that it is an SERM. I'm still not sure that there is enough evidence to support taking anything beyond 10 years, and would like to hear from those who are, and what the medical reasoning was (if possible) and what any side effects are (if possible).

    So far it seems like a lot of you are also wondering if more than 10 is better. Still hoping for more feedback and info regarding my original query.

    He said, quote, I want you on "something". But that isn't convincing enough for me. I wonder what those who have a similar dx have been told. Again, I wait for more input, if it is to be had out there.

    I do plan on getting a second opinion from another oncologist as well, even if he presses, and will ask him to provide some literature about this newest trend.


  • doxiemoxi
    doxiemoxi Member Posts: 1
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    I’ve completed lumpectomy and radiation. Dec 2021. They put me on anaztrozele and had bad side effects after two months.

    Dx- dcis stage 0 grade 2. No lymph nodes. I’m post menopausal. Age 62. Dcis- in situ

  • erento
    erento Member Posts: 187
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    Claire, another factor in your doctor's decision may be that your cancer was ILC. I remember reading that they tend to recur later (along with HR+ cancer types). He's probably just being overly cautious. Mine wants me on something for 10 years and I'm on year 7. I'll see how I feel in 3 years. On one hand, I may feel "naked", on the other hand it must nice not to be on any med after 10-11 years!

  • jrnj
    jrnj Member Posts: 407
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    Hi Claire, you were an inspiration to me when I was diagnosed with ILC. Unfortunately I feel like they just don’t know as much as we would hope. I saw two top docs at Rutgers NCI and Sloan with totally different opinions on chemo. One told me you starve the cancer with endocrine therapy and it dies. Or is it just dormant? First 5 years then 10 than as long as you can tolerate. It’s depressing I’m miserable on AIs. Maybe SERMs aren’t as bad.

  • elainetherese
    elainetherese Member Posts: 1,625
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    I've made it through 7 years of Aromasin + Zoladex. I have ordered the Breast Cancer Index test to find out whether it's worth it to do more hormonal therapy. My oncologist has been sort-of dismissive; she insists that the BCI test will likely say I need more hormonal therapy. But, I want to know. I'm tired of the monthly shot. I'll let you know what my results show and what my oncologist says about the results. What does your oncologist say about the BCI test? Is that a possibility for you?

  • hopeful82014
    hopeful82014 Member Posts: 887
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    Erento, my understanding is that the latest research shows that ER+ cancers, both IDC and ILC can recur up to 32 years post diagnosis. I'm also seeing indications that after 10 years (some research says 7.5 years in lower risk cases) the benefit of continued ET is in preventing local/regional recurrence rather than distant.

    I don't have links at hand but did look into this extensively last summer and fall.

    We also discussed the BCI now that it's been validated for node+ cancers but the research didn't look terribly promising to me. Since my out of pocket would have been minimum $1K, I passed on it. I'd like to have the information but not at that price.

  • FaithAndTrust
    FaithAndTrust Member Posts: 14
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    claire thanks for posting..tis a hot topic for us all. I am nearing 7 years on lethrozole..now Anastrazole..as side effects hot harder with lethrozole. I asked my Onc about the ten year question on my last visit. He said that honestly after seven years on Als their job is pretty much done..However in his view if I am tolerating the Als well he recommends I stay on them possibly for life because even small benefit possibly better than none..you will see I am ILC too..I queried late recurrence with ILC he said it was no different to ductal. Hope this helps but looking forward to further input from others on this..🙏

  • claireinaz
    claireinaz Member Posts: 679
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    Hi all, thanks for joining the discussion. I too had problems with Arimidex-and switched to Exemestane which was about 1000 percent better (for me), and allowed me to finish the course of tx.

    I agree my doc is being overly cautious, and yep, we know ILC tends to recur later than IDC-the reality is all of us are never really out of the woods completely, but ILC'rs are less likely be be out of the woods permanently than IDC or other subsets of BC.

    Still interested to see what research is done to support BEYOND 10 years. I did have mild osteopenia at last DEXA, which is why he wants Evista, and I agree (if I agree to take it).

    Continuing exhaustive research on my part has resulted in a big fat silence from the scientific community on taking Evista for dx'd ILC'rs after completing 10 years of an AI. Lots of research of course for taking it for women who are at high risk but don't have an dx of BC. Lots of research for women who have osteoporosis to take Evista.

    But for my specific ILC, node +, Stg. 2 dx? Crickets.

    At any rate, I'll get a nice break from an AI for a month before I see him in May to move forward.

  • FaithAndTrust
    FaithAndTrust Member Posts: 14
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    claire naz..I have trouble understanding why ".. ILCs have less likely to be out of the woods permanently than IDC.."

    I have asked my Oncologist about this and he insists it is not the case..

    Please can you help me see what I am missing here..

    Many thanks

  • claireinaz
    claireinaz Member Posts: 679
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    faith and trust, we are more likely to recur at a later time in our lives than IDC for a variety of reasons. There's a lot of talk about it in the ILC forum, or you can get more explicit science if you pose your question to fellow ILC'rs there. It has to do with the nature of the way ILC grows, hides from scans, recurs more, and grows more slowly, overall. I don't mean to scare you, and it doesn't mean we all recur later. It's why we really need more help treating ILC separately from IDC or other subsets, instead of a "one size fits all" type of treatment protocol.

  • sbelizabeth
    sbelizabeth Member Posts: 955
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    Stage 3b inflammatory here, with a high risk of recurrence. It'll be ten years on Femara this July. I asked my oncologist at my last yearly appointment if I could continue after ten years and he said, "let's see what the literature says when we get there."

    I would love to be off this drug but I'm scared to risk it. My gut is telling me the Femara is keeping the beast asleep, in chains, and if I discontinue it the monster will come roaring awake and attack me again.

    My oncologist asked for a BCI for me but they won't do it with more than four positive lymph nodes.

    If anyone has a crystal ball stashed in their sock drawer, please share.

  • nancyd
    nancyd Member Posts: 556
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    I'm way passed ten years on anastrazole (heading towards year 14), and I plan on staying on it as long as my bone scans hold up and my onc will prescribe. I'm in my early 70's so I haven't got far to go before I hit my peak (that's a little sarcasm). When things start sliding downhill, I might opt to drop the AI in the hope it eliminates an ache or two. But right now, I'm willing to live with most of my pain, be it AI induced or coming from other age-induced sources.

    It seems to be a very personal decision as long as you have an onc who lets you call the shots about these things. I haven't done any research on the long-long-term efficacy of AIs, but that is what seems to be the question that is begging an answer. It's definitely for bigger minds than me, but I will be waiting for results.

  • FaithAndTrust
    FaithAndTrust Member Posts: 14
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    Thanks Claire I will look more closely at Lobular forum...I hope we can get more answere from ladies who are ten years out and how they made their decision..

  • jrnj
    jrnj Member Posts: 407
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    What I don’t understand is why information is not collected and reported from real patients every day. Why is everything based on limited time small group clinical studies? I suspect the move to stay on these drugs is because of people experiencing recurrence shortly after stopping. I feel trapped like I’ll never be free again. I suffer so many side effects.

  • lillyishere
    lillyishere Member Posts: 770
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    Claire, I am ILC with node-positive as well. My MO told me that the ILC recurrence rate goes up all the way to 10 years and then slowly, starts going down. I can't find an article from Dr. Sikora but he posted that ILC average recurrence happens in 8 years. Your MO seems to know the sneaky ILC. Too bad that is no research after 10 years on what happens to us who are on younger side.

  • claireinaz
    claireinaz Member Posts: 679
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    Lilyishere, I hope you are right. I know that the science on our sneaky subset changes, and much has changed since my initial dx in 9/2011. I will be getting a second opinion on all this--from my former and much trusted MO, who retired about 4 years ago, and has since come back. I may switch back to her, but there are problems with the cancer center she is a part of, and that may keep me with my current MO for now. I'm sick of doc swapping (been through 2 since my former MO left). I just took my last exemestane, though, of my life, this morning. So that's something.

    If anyone is taking Evista, I'd love to hear how it's going for them, particularly side effects, etc.

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    "What I don't understand is why information is not collected and reported from real patients every day. Why is everything based on limited time small group clinical studies?"

    Money. There's not enough research funding to study everything we need studied. Those kind of real patient review research projects are done, but they still cost money.

  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
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    Hi Claire,

    First of all, I need to change my screen name as I now live in Coeur d'Alene ID, but just haven't gotten there yet. With IDC, the evidence just wasn't convincing enough to me to remain on AIs past 5 years. They had to work too hard to find statistical significance.

    The big one you do is exercise which has the most benefit once you have finished all treatment, the study results were published here on BCO about a year or so ago. Just jaw-dropping. (I know for a fact that you are fit.) I am extremely interested in those results because I was one of the study participants.

    Evista has a benefit that I think is worth considering in this discussion. Ten years on AIs can't have done a great service to your bones. Unlike AIs, Evista appears to strengthen bones, so you could get that benefit as well. Worth checking into.

    Yes, I would definitely get a second opinion. Congrats on taking your last AI. Warning: food tasted a lot better to me afterwards with no more metallic taste.

    Good luck with your next step....whatever it turns out to be. - The Other Claire

  • claireinaz
    claireinaz Member Posts: 679
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    Claire, something about "claireinCoeurd'Alene" just doesn't work, does it? You'll always be "the other Claire" to me.

    Yes, I am still doing hot power flow yoga, pilates, weights and hiking weekly, walking almost every day for 2 or so miles for my dog (and me). Now that it's warming up here in the high country of Arizona, biking will be added, too. I think my resting pulse rate is about 52 average, so that's a pretty good indicator of my athletic conditioning.

    I suppose I could consider taking Evista because yes, I do have some mild osteopenia, darn it. I get Prolia injections 2x a year, though, for that, and it also protects bones from possible recurrence, so I'm okay with it.

    Something about the psych behind having to take anything beyond 10 years is working against me. I need to flip it to, "I'm taking Evista for bone strength", instead, and don't think of it as a SERM only. That might make it easier to take.

    I am tracking my overall mood, now that I'm off aromasin. It seemed to spike my generalized anxiety disorder.


  • claire_in_seattle
    claire_in_seattle Member Posts: 2,793
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    Hi again....

    I am so itching to get on my bicycle, but alas the repair shop has to source parts off eBay. So I am using this time for hiking and exploring. I have also figured out a great running path for a jog of 4 miles or so. I am really dreadful at this, but in my head I am saying "pound those bones."

    (A couple of years ago, I was bemoaning how terrible I am at jogging when a lovely gent pointed out the obvious. Anyone out running on Superbowl Sunday is literally miles ahead of the couch potatoes whose exercise for that day consists of going to the fridge for yet another beer!)

    I am off in a few to explore a nearby nature preserve/hiking trail and hope to make it to the overlook. I will layer up as temps are currently in the 30s. I have already done crunches on my exercise ball and will follow with weights this evening. Though larger than I would like to be at the moment, I am sculpted. All this exercise has proven very useful in the move as I could put together furniture myself.

    My overall mood has improved now that I have changed up the fabulousness-to-drudgery ratio, working far less than a year ago, but enjoying it a lot more. Also, my new office has sunshine....what a delight!

    I need to fuel myself with some eggs and get rolling. Good luck with this next phase of your life. Plan a celebration and reframe Evista. You can do this! - The Other Claire

  • jrnj
    jrnj Member Posts: 407
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    parakeetsrule, I just looked up seer registry and my state is actually in it. I wouldn’t know that from my drs.

  • kotchaj
    kotchaj Member Posts: 209
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    Hi there, I was referred to this thread from someone in our Arimidex group. I've been told by my onc that I'll be on Arimidex for life. I had IDC and mucinous both. Started out with IDC with mucinous features in my biopsy, then when I had surgery, discovered I had two kinds of bc. I'm stage IIIC, Grade 2, ER+PR- ER 90% positive. HER2-. I also had 20/21 nodes positive. Had clean margins but with that many lymph nodes, I wasn't horribly surprised. I"m also on my second month of Verzenio. Thank GOD that isn't for life. It's horrible. Armidex isn't a walk in the park, but if it keeps it from coming back, then I'm willing to take it as long as my body can handle it. I'm 58 and other than cancer and hypothyroid, I'm healthy. My first DEXA scan showed that I have no osteopenia at this time.

    It's FEAR. Fear if I don't take it, it will come back with a vengeance. Fear that I do take it and it will come back. Just FEAR which I'm praying will lessen with time.

  • katyand4
    katyand4 Member Posts: 32
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    Greetings to everyone! I will be 11 years this Sept at my most recent appointment my oncologist told me I could finish what I had left of my tamoxifen and that would be it. I will now see her 1x year unless something pops up but I would no longer take any meds. I'm scared out of my mind that BC will come back. I was 45 when diagnosed - turned 56 last Feb. I guess taking the pill for the past 11 years gave me piece of mind...my mom was diagnosed with IV when she was 74 and sadly lost her battle in 2019. I just feel like 56 is still young and that maybe I should be on something else. Are there other survivors out there that have taken the tamoxifen or other beyond the 10 year mark???? Any feedback provided would be very much appreciated.
  • claireinaz
    claireinaz Member Posts: 679
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    Hi all,

    My former MO who I loved and trusted returned to active practice this June. I dropped my previous oncologist, who I had major problems with, and went back to my former. The first thing she told me is that the latest research on aromatase inhibitors says that, if we aren’t having any side effects, that we should stay onthem for as long as we can, past 10 years, but this is for AI, not tamoxifen. She put me back on aromasiin after a 3 month hiatus. She also said that evista is not rx’d for recurrence in women have already had a bc diagnosis, so previous MO was wrong to give it to me. I get a prolia shot every six months to protect from any side effects of aromasin and bones. (OT, I have had prolia before; it also has, according to my now MO quoting latest research, great bone recurrence protection, so it’s a double benefit for me).

  • sbelizabeth
    sbelizabeth Member Posts: 955
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    Claireinaz, thanks for updating us with this! I'm heading to a new oncologist later this month--my old one moved to inpatient only--and I don't know what her position will be. I passed my 10-year mark in July. I'm scared she will want me to stop, and scared she won't. I'm on alendronate for my bones; it's a bisphosphonate, and I think my old onc chose it because it's cheaper than Prolia. The letrozole has really done a number on my lady bits; every time I sneeze I get another UTI. My urologist is really pushing vaginal estrogen but my oncologist was against it big time, and truthfully I don't think I'd be comfortable with it. I'm convinced that taking estrogen replacement therapy back during menopause is what kick-started this whole sh*t show. As much as constant UTIs interrupt my life, they're nothing like what Stage 4 breast cancer would do.

    How did you feel during your three-month hiatus, and how do you feel now? Was it tough to jump back on the AI wagon?