Stage 3 ER+ How long hormone therapy?

Sophiemara
Sophiemara Member Posts: 66
edited October 2018 in Stage III Breast Cancer

Hey, I'm just wondering with stage 3 bc ER+...how long did you take hormone therapy?

I've seen from other threads that people are taking them for 10 years plus in some cases for this stage, but are there any ladies/guys who haven't completed as long and how are you fairing in terms of outcome (any recurrence etc)?

Has anyone interrupted (as in had a break and gone back on it) their hormone therapy?and does having a break have a detrimental effect to survival?

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  • Mimi321
    Mimi321 Member Posts: 8
    edited March 2018

    I completed 7 years and so far I'm 15 years NED. Back then they were saying 5 years. Because my bc was stage 3 and aggressive the doctor let me stay on a little longer.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2018

    There's so much new information coming out. AI holidays, length of therapy comparisons, BC Index.

    I'll be six years in July, and my oncologist originally said ten years.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited March 2018

    My sister and I were both Stage 3 - I was Her2Pos and she was Her2Neg.

    Our very credentialed Onc who directed a lot of the newer studies says 10 years plus.

    We are both high risk with genetic mutations. I've been on Arimidex for 5.5 years,

    she has been on the same for 2 years.


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  • Kathleen26
    Kathleen26 Member Posts: 210
    edited March 2018

    Sounds like maybe you are thinking about stopping or taking a break from AI's. I don't think that hearing of anyone else's individual experience one way or the other has any bearing on what could happen or not happen to you if you stop. Some will recur and some will not. You have to decide if you're willing to take that risk.

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  • Sophiemara
    Sophiemara Member Posts: 66
    edited March 2018

    Thanks ladies, really appreciate your advice.

    Hi Kathleen26, it's not that I want to come off HT early per se, it's just I have a really tricky dilemma.

    I'm 37 with no kids and have always dreamed of having a family, so I'm looking to interrupt HT in order to become pregnant, but with the aim to go back on it the day of giving birth 😃

    I'm thinking of interrupting approx 3.5 years (next year) into HT, as that would make me 38, which according to fertility stats is the age when egg reserves really start to decline. However obviously I'm really on edge about this being stage 3.

    I fear if I wait until 40 (5 years of HT it may be too late/end of biological clock) and I still don't know if anything works, as my ovaries have been suppressed ever since chemo.

    I suppose I'm trying to do as much research as I can to weigh up the risks, but I'm struggling to find information.

    I know everyone's different, but I guess I feel that any stats or clinical research would able me to make a well informed decision.

    I obviously don't want to risk my life (it's scary as hell) and can see that continuous hormone therapy for 5-10 years plus is without doubt amazingly beneficial for the survival of stage 3ers.

    I just wonder with what used to be the standard 5 years..if 3.5 or 4 years of HT would have such a detrimental impact..and why 1 extra year (to make 5 years) of taking HT makes such a difference to outcome/survival. Especially if you went back on it afterwards for the remaining 6 or so years.

    I feel like if I'd been a bit younger at dx or already had a child, I wouldn't even question (interrupting) it but because of my age, i don't want my cancer dx to take away one of the most natural and joyous experiences in life.

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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited March 2018

    Sophiemara...I just hate this disease, and the choices it forces us to make. I'm so sorry you're facing this decision. It would be so lovely for you to forget about BC and plan your family. Gentle hugs.

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  • Sophiemara
    Sophiemara Member Posts: 66
    edited March 2018

    Thanks so much Elizabeth! Yeah really appreciate your kind words. It’s a tough one, but I’m sure in time I’ll come to some decision. I keep an eye on the latest trials papers, so hopefully something will come to light within the next few years. Cheers.

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  • jcp
    jcp Member Posts: 112
    edited March 2018

    Hello everyone on here! I was recently taken off the hormone blockers due to bone density health. I was on it 10 years. Now I am a little worried b/c I don't have that protection anymore and I didn't have a mastectomy. I am considering a double mastectomy now, but it is a lot to go through. Thoughts? I originally had a lumpectomy.


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  • Limkgirl
    Limkgirl Member Posts: 2
    edited April 2018

    hi Sophie I’m a stage 3a lady , dx in 2011, with 4/14 nodes affected, er/pr+ her2- , grade 2. I’m brca + and had ovary removal in 2016. I didn’t have any fertility preservation before ovary removal as my egg reserve was totally diminished. I was dx at 30 with a 5 month old baby.. I’m ttc no 2. I went on armotose inhibitors then after my oopherectomy.. Unfortunately I’ve had 2 failed rounds of ivf using donor eggs. I’ve 3 embryos left so I’m going to use them. I’ve been on my aromatose inhibitors since ovary removal but I’ve been able to take them in between cycles but all in all, I’ve been off my hormone treatment for 1 year, my oncologist is supportive of me having a break for a baby. He says the extra years is only marginal and if it’s what I want, he supports me. I’ve also had a consult with dr Oktay in the states who has carried out research on bc patients having ivf. Well worth speaking to, I have to say..We have a Facebook page in Uk and Ireland called ybcn fertility group where all us ladies chat about ttc after bc.

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  • Sophiemara
    Sophiemara Member Posts: 66
    edited August 2018

    Thanks so much Linkgirl, that’s good your oncologist is supportive. How many years were you on hormone therapy initially? Yeah I will totally join that group, it would be good to hear others experiences. Hope it works out for you!

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  • AgentMo
    AgentMo Member Posts: 72
    edited August 2018

    Would you mind my joining, too?

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  • NancyD
    NancyD Member Posts: 3,562
    edited October 2018

    I hit ten years of anastrazole in September. I have my annual appointment with my onc later this week, and my prescription has come to it's last week with no refills left. I will ask him if he'll let me stay on it, but I'm concerned that my insurance will deny an extension based on the current protocol.

    I was going to ask him about a break to see if my joint pain would get better, but with my prescription running out, I want to make sure he'll renew it, first. If he recommends against it, I'd like to then ask for a PET scan which I haven't had since I was preparing for my reconstruction surgery nine years ago. If that doesn't show any activity, I'll feel better about stopping the AI.

    I've been VERY good taking my AI, missed maybe one or two days in ten years. I started taking Vit D3 with it a few years ago just on the hunch that they would work better together, like the Vit D would drag along the AI into the bones like two friends on a girls' night out, lol. There's absolutely no clinical evidence or tests for that, just my way of making sure I take them.

    What's the word on life after the AI's after ten years? I'd like to hear some more experiences.


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  • letsgogolf
    letsgogolf Member Posts: 263
    edited October 2018

    NancyD Congrats on 10 years! That is fabulous. I have only been on this med for 16 months and I found out last week that I have Osteopenia. My Dexa Scan was normal two years ago. I want to stay on for 10 years as well but I am guessing the doctor will fight me on it. They told me last week that I would be on for 5 years only. Also, I wanted to let you know that you can buy 90 days worth of generic Arimidex (Anastrozole) at Sams Club for $12 if you have the Plus Membership. That is a cash price not using insurance and by far the best price I could find.

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  • NancyD
    NancyD Member Posts: 3,562
    edited October 2018

    Thanks, letsgogolf. No Sam’s Clubs around me but maybe there’s another place that sells them that cheaply. First things first, though. I’ve got to get my onc to agree to continue the script.

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  • sugarplum
    sugarplum Member Posts: 318
    edited October 2018

    This December will be 13 years for me on Arimidex. I had osteopenia even before my diagnosis, so they've been watching my bones very carefully with annual DEXA scans and 6 infusions of Reclast (which I've since discontinued as my bone density seems to have finally stabilized). I have an onc appointment coming up on the 6th and fully intend to get my prescription renewed (I had to look long & hard to find a doctor that would do that when I reached my 10-year mark in 2016). I too have never missed a pill!

    Call me superstitious, but I just can't see stopping something that at least APPEARS to be working...

    Julie

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  • marijen
    marijen Member Posts: 3,731
    edited October 2018

    Bone density scans are not used to detect cancer.


    https://www.mayoclinic.org/tests-procedures/bone-d...


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  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2018

    My sister and I were both Stage 3 - our Oncologist told us to expect to be on it a minimum of 10 years but more if our bones hold out.

    So far they have! I just started year 6 - the bad SEs I had have declined through the years. Still have some joint and bone pain that acts up like arthritis, but it is tolerable!

    GOOD LUCK!

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  • NancyD
    NancyD Member Posts: 3,562
    edited October 2018

    Sugarplum, my bone density has been fine, so I think my onc won't have a problem based on that. I kind of wish it showed a le-e-etle density loss, as then he'd have a good reason to put me on a bisphos since the evidence is leaning towards them helping to prevent bone mets. I'm due for a another bone scan in early 2019, so unfortunately he'll be working off of info that's almost two years old.

    My appointment is tomorrow. No nerves over this but I'm working myself up to ask about the tests I'd like done. You'd think after over ten years with the same onc, I'd be bolder, but the whole routine intimidates me.

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  • YATCOMW
    YATCOMW Member Posts: 664
    edited October 2018

    I continue to be on Femara and have no intentions of ever stopping and my oncologist is fine with that. My stats are too bad to even consider stopping something that for me has been the silver bullet. I've been on it for 14 1/2 years. Fortunately for me I have had no bad SE taking the pill which I know has not been the same for others.


    Jacqueline

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  • NancyD
    NancyD Member Posts: 3,562
    edited October 2018

    Onc said since I am good per my last bone density scan, stay on it. So script is renewed, but he said OK to take break to see if joint pain is reduced. I doubt it will ever go away entirely.

    New bone scan script, too, so we'll see those results.

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