Tamoxifen, anastrozole etc for more than ten years?

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I started Tamoxifen around June, 2011 and a few years later was switched to Anastrozole along with Lupron. Had been told a few years ago about the research looking better for being on these drugs for ten years as opposed to five.

I am seeing my oncologist next month and I have a feeling that she will take me off Anastrozole. I most definitely have not enjoyed the side-effects of these drugs (the later combo particularly) but my fears outweigh those for me. For the past several months, the possibility of stopping the medication has been weighing on my mind, and as this appointment gets closer, going to be honest, I am terrified of losing this safety blanket.

I've read some of the more recent articles and such about this, but just wondering, has anyone stayed on these medications for longer than ten years?

Comments

  • Lime
    Lime Member Posts: 19
    edited May 2021

    I am approaching 10 years on Arimidex and it has been on my mind as well. I started Arimidex in January 2012 and have had no notable side effects. Granted, I did slip into osteoporosis so managing that is a concern. I also enjoy that perceived safety blanket. I did bring this topic up during my last couple of oncology visits about taking this beyond 10 years and if there is any data or ongoing studies in support of this. I was told that this is very powerful medication and the studies show that the risks outweigh the benefits after 10 years. Hmmm - I am coming to terms with going off it and part of me is looking forward to not taking this medication. Also, the possibility of having some improvement in bone health is nice. But I can't help feeling vulnerable after stopping my little white pill after all this time. Have others had a different experience when talking with their oncologists?

  • Jinx27
    Jinx27 Member Posts: 238
    edited May 2021

    Good Morning Ladies,

    Im also in this boat too. Ive been on Arimidex + Lupron for close to 4.5 years, due to the side effects I requested an appointment with my MO to spend time weighing the pros and cons in regards to coming off of these drugs. The other option would be taking Tamoxifen alone for the remainder 5 years. Im supposed to meet with her Tuesday. I plan on writing down tons of questions.

    I cant help but be a bit fearful about what my risk for recurrence would be if I chose to remove the "security blanket" of Lupron and Arimidex. Im a younger patient who's risk for recurrence is high due to my age at diagnosis and a possible genetic mutation/variant.

    I cant help think that it is disappointing that depriving a woman of estrogen is seen as top of the line medical care. My quality of life with these meds have decreased. However Im still here cancer free right? I wish we didnt have soo many side effects.

    I'll be sure to report back about my conversation w/ my MO!

  • ChemicalWorld
    ChemicalWorld Member Posts: 172
    edited May 2021

    Thanks so much to you both. I hate that anyone has to think of these things, but it is also good to know my thoughts and fears are not "out there". I feel like I'm supposed to be joyful at the thoughts of ending this medication regime.

  • Jinx27
    Jinx27 Member Posts: 238
    edited May 2021

    According to my MO there is no benefit to hormonal therapy past 10 years.

    Just came to post about my appointment with my Oncologist this morning, here are the details;

    I expressed my family physicians concern over my overall health; increased weight, obesity, high cholesterol, risk for prediabetes, high A1C and concern for my heart health. I strongly believe the Lupron is the biggest culprit. My MO agreed that Arimidex and Lupron can be stopped.

    If it were not for my two positive lymph nodes, she told me she would have stopped all meds at 5 years completely. Therefore we are sticking to 10 years of therapy BUT with the remainder of the 5 years being solely Tamoxifen. Im quite alright with that.

    She strongly believes that the 5 years of OS + AI got rid of any circulating cells but due to my 2 nodes and age of diagnosis, the remaining five years of Tamoxifen should be fine.

    I think due to the nature of ER+PR+ BC coming back 10 - 20 years after the initial diagnosis alot of MO's push for 10 years of hormonal therapy depending on the patient.

    I expressed my concern over a possible risk for reoccurrence now that the ovarian suppression will be out of the picture. Does having a period and increased mensuration increase my risk for recurrence? She stated that there have been studies showing that they're is a increased risk but those were NOT done in patients who had OS+AI for 5 years.

    I hope this helps anyone out. Dont be afraid to schedule time to speak your physician!

  • ouray17
    ouray17 Member Posts: 54
    edited May 2021

    Talked with my radiation oncologist about this today. He said within two years there should be substantial documentation with sub-categories for length of time. He said Tamoxifen competes with estrogen, but AI’s block estrogen before it starts to cause a problem. According to him, originally Tamoxifen was given for 10 to 20 years but while it did a great job with breast cancer, women were getting blood clots & having heart problems so 5 years became the norm & why the norm for the AI’s is 5 years, but early research is showing some early stage patients only need 2to 3 years. Some like me need 7 and some with more aggressive disease will need 10+.

  • Lime
    Lime Member Posts: 19
    edited May 2021

    A BIG thank you for this feedback from your physicians. It is very definitive and confirms what mine had said as well. I feel like I can confidently go off knowing that my treatment was appropriate and completed.

  • Jinx27
    Jinx27 Member Posts: 238
    edited May 2021

    Lime,

    Your welcome, Im soo happy you get to go off of your meds. Any particular plan for you since you were HER+? I dont know much about HER+.....


    ouray17,

    What your radiation oncologist said sounds great, it would nice to have a sub category for length of time. My guess is this will take into consideration age of diagnosis, stage, tumor characteristics etc.

    I cant believe Tamoxifen was given for 20 years! If you dont mind me asking what lead to your Dr. saying you need 7 years of hormonal therapy? And by more aggressive did you mean stage? or tumor characteristics? Just to be clear your RO is saying 10+ years for very aggressive? Im guessing thats why I was given 10 years...

    My MO also mentioned that she believes that Tamoxifen's effectiveness is somewhat forgotten. Im thinking maybe AI's might be pushed to be the standard of care in the future because of what they do in the body....

  • gb2115
    gb2115 Member Posts: 1,894
    edited May 2021

    So I just ended up with a local ER+ recurrence while on tamoxifen. I had originally planned 10 years, but then decided probably 5 because of extremely poor quality of life on tamoxifen. Didn't expect a recurrence while still on it. Thinking it didn't work so well...I took it faithfully, while my lady parts shriveled up at age 42. Kept taking it. Missed two doses over 4 years. Once with a stomach bug and once while NPO for colonoscopy. So it's not that I didn't take it right. I did start vaginal estrogen a couple of months ago (out of pure desperation), but the new tumor is slow growing and sizeable enough that it's been there for awhile, long before I started that. It was embedded in scar tissue so mammogram and physical exams missed it. Good thing I didn't cancel my MRI...

    Honestly don't know what they're going to do with me, with the tamoxifen and the fact I clearly don't tolerate my lady parts not having estrogen.

  • chickadee521
    chickadee521 Member Posts: 564
    edited June 2021

    I just asked my dr today if I could go off. Almost at 10 years. I’d like to be off it several months before my check up in November. She said I could do I will. Very nervous.

  • ChemicalWorld
    ChemicalWorld Member Posts: 172
    edited June 2021

    Just checking back in, had my appointment with my oncologist today (first time in person since 2019 !! ) I had myself braced but before I even mentioned anything she was talking about my meds told me that my ten years total is not up until next year, so my prescription for anastrozole was renewed along with the Lupron. She basically said that the oncology team will by then be able to decide how we move forward depending on the research etc.

    I told her I was happy with this plan. I guess it's one of those things where it depends when you start counting?


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