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To continue with hormonal therapy beyond 5 years or not

may18
may18 Member Posts: 2

I was premenopausal when I was diagnosed with Stage 1, grade 1, highly HR+, HER2 - breast cancer 4 years ago. Yesterday, my MO said I could be nearing the end of the hormone therapy, but she gave me two options. 1. Continue on Tamoxifen for 1 more year in order to complete 5 years of treatment and then stop or 2. Switch now to an AI (I have since become menopausal, could be age or could be the tamox but my doc said now am considered post meno) and continue with that until reaching 7 years of treatment. She said that either option is reasonable given my favorable stats and that I have tolerated Tamoxifen well. I am a thin woman with Osteoperosis in my family, so a little concerned about bone loss on and AI. My lifestyle factors are all great, exercise, eat right, sleep well, etc. Anyone else faced with a similar decision? What did you choose? Or even if you don't face this decision, I'd love to hear peoples thoughts. Thank you.

Comments

  • ruthbru
    ruthbru Member Posts: 46,709

    I was postmenopausal, PR negative & only mildly ER positive. I did 5 years of an AI and quit. My doctor said if I wanted, he would have let me stay on it for no more than 2 more years as 'these are serious drugs'. (Reading between the lines, I took that to mean those two years would have been more for physiological than medical purposes.) I too live a healthy lifestyle with lots of exercise, little alcohol, keeping a healthy weight etc, (all of which really reduce the risk of recurrence). No one can tell YOU what to do. But if I had your stats (and Osteoporosis in the family tree), I would stay on Tamoxifen for the 5th year and then I would quit.

  • may18
    may18 Member Posts: 2

    Thanks Ruthbru! I appreciate your response!

  • rah2464
    rah2464 Member Posts: 1,192

    May I am on year four of Tamoxifen and my MO is talking about five years being good. He said that when that time comes we will look at the percentages, but in his words, the drug is very powerful and those additional 2-5 years only move the % needle a tiny bit. Its just a personal decision. For me, side effects have been/ are very difficult so it will be easier for me to walk away. If you tolerate the med well and are suffering no bad effects, could be a different answer. Good luck with your decision.

  • ctmbsikia
    ctmbsikia Member Posts: 749

    Hi. I was post menopausal at diagnosis (56). I am in my 5th year of anastrozole which is what was recommended for me. I'm pretty sure I am done with this little white pill. I've tolerated it well but I do have aches and pains especially in my hands and feet, and sometime the wrists. My hair is God awful thinned from what it once was. I'm tired of cleaning it up-it's everywhere! I'm not going to push for the index test, I'm also tired of stats. My tumor was 4cm and I did have a micromet in 1 sentinel node. I'm hopeful that the radiation and taking this hormone therapy has cleaned up any stray cells and that I will remain cancer free until something else kills me.

    I see MO again in January and then in another 6 months, so counting down to next July -I'll come back to proclaim the end of hormone therapy. I am grateful though.

    Best wishes to all.

  • claireinaz
    claireinaz Member Posts: 662

    My former MO, who has returned to active practice and is caring for me again, put me back on exemestane in June after I completed 10 years back in March. She said that current research says if there aren't any dramatic side effects (for me so far, just mild osteopenia in my lower lumbar region, which could be age-related too) that women should stay on AIs for as long as they can.

    She said it's because women are recurring after 10 years when AIs are stopped at 10 years.

    I give myself Prolia injections every six months, which MO also says helps prevent recurrence in bones.


  • ctmbsikia
    ctmbsikia Member Posts: 749

    Claire that's interesting. I recently saw my GP and he had asked me if I was on the 5 yr plan or the lifetime one for the AI. I was also diagnosed with osteoporosis at my bc diagnosis and been getting Prolia when my insurance covers it. I had no shots in 2021 and my spine got a little worse. I hope they just say you're done---if new research reaches my MO by next year then I guess I may have a decision to make. At the very least, I will take a break. Thanks for your insight. Glad you are dong well.

  • elainetherese
    elainetherese Member Posts: 1,625

    Hi all!

    When I first started hormonal therapy in 2015, I was premenopausal so I did both ovulation suppression (Zoladex) and AI (Aromasin). I am still premenopausal even though I'm now 55 (did blood tests during Zoladex vacation twice). I did the Breast Cancer Index test a few years ago and got the most annoying result. The BCI said that I'd get no more benefit from hormonal therapy but that I nevertheless had a 19% chance (or high risk) of recurrence! Thanks for nothing, you $900 test! So, here I am, in my seventh year of Zoladex + AI. My cancer was 95% ER and 95% PR so, I figured I'd do at least the ten year plan unless new studies suggested otherwise.

    Yes, I developed osteoporosis on OS + AI, but with Prolia, I'm back to osteopenia.

    Yes, thanks for sharing your MO's insights, claireinaz. It never hurts to hear what others are thinking.

  • claireinaz
    claireinaz Member Posts: 662

    ctmbsikia , it looks like I'll be on it as long as my body can tolerate it. That's interesting that your doc said "lifetime plan". I'm lucky, I guess, that I don't have many side effects so far--I am very active, and that might make a difference. I feel like I'm always teetering on the side of a recurrence since I'm very high risk with + nodes, and ILC tends to recur later than earlier anyway. Point is, once we have it we are all at higher risk for recurrence no matter what the status, but I'm kind of way up there. So I'm actually not unhappy to be taking something, and getting Prolia every six months as well.

  • inccmd
    inccmd Member Posts: 14

    I just finished my 5 years of Tamoxifen (09/28), and my MO said there wasn't statistically enough difference to continue(ILC Right, 1cm, Stage IA, Grade 2, 5/0 nodes, ER+, PR+, HER2-). I was premenopausal when I began and went through menopause at some point. This past spring I had breakthrough menstrual bleeding which led to a whole battery of unpleasant tests. No uterine cancer at least, but my uterine wall is much thicker than it should be. That's another reason I am glad to finish the Tamoxifen. Although I have fought through it and remained active, it's been 5 years of achy muscles and joints, poor sleep, night sweats, fatigue, and edema in my legs and ankles. Even if my doctor had said 5 more years, I think I would say no. I'm proud to have made it to the 5-year mark, and I hope that all the issues I have had will fade.

    It's funny. We each share so much in having a breast cancer diagnosis, but the cancer and the medical journey are so individualized.

  • rah2464
    rah2464 Member Posts: 1,192

    Inccmd congrats on your five years ! For those of us that have intense side effects on Tamoxifen, I know personally what an accomplishment that is.

  • pebblesv
    pebblesv Member Posts: 486

    Congrats on reaching the 5-year milestone! I'm almost 4 years in and honestly I debate whether to quit now or keep going to the 5 years. In the first couple years I was feeling good and SEs were minimal, and I keep up swimming a couple times a week which I think has helped me not have joint pain, but recently, my 'time of month' has stopped, I just noticed that my hair doesn't seem to be growing (I haven't cut it in 6 months and I swear it's the same length) and I HAVE had major weight gain as a side effect.

    My husband wants me to stick with it through to the 5 years. But part of me wonders if I should just stop now, and are there any stats on sticking it through one more year?

    Anyways I know this, if I do stick with it and make it to my 5 year milestone, I'm stopping tamoxifen no matter what, even if my oncologist says to keep going. Right now I'm really debating whether to continue into the 5th year.

  • muska
    muska Member Posts: 224

    I am completing year 9 on Anastrozole. My MO already told me she would want me to continue after 10 years but switch to tamoxifen or another drug from the same group ( forgot the name.) That is because I am high risk for recurrence as evidenced by my stats in the profile.

    I may seek a second opinion next year but so far I haven’t seen new research data to indicate a different clinical approach for someone who had many positive lymph nodes at dia

  • inccmd
    inccmd Member Posts: 14

    Wally, yes to all your queries about the socca making. I will try a couple of things I read about in recipes following my failures. Sift the flour and use warm water. My batter turned out very thick so I added water to try to reach the stage of "like heavy cream." I rested the batter longer than 1/2 hour on the first go round. I tend to be stubborn and it irritates me when I don't succeed at making something so many people seem to make without problems. LOL.

    I didn't realize your dh's health situation was critical. Hugs to both of you. I totally understand the stress of a partner being ill.

    Mae, I smiled at the description of your grocery shopping trip.

    The leftover red beans were delicious again last night. But there are still leftovers since I cooked a lb. Maybe I'll try turning them into chili.