Tamoxifen

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Lantana70
Lantana70 Member Posts: 33

After 5 years on tamoxifen, I have just been told by my oncologist to stay on it for another 5 years. I had estrogen positive breast cancer with no lymph node involvement (grade 2). Fortunately no chemo or radiotherapy. She claims this will keep me protected because my cancer was strongly hormonal. Apparently the receptors were 80% positive to estrogen. It always astounds me that we do not have a discussion about how to NATURALLY lower my estrogen levels. I'd love to know everyone's thoughts on the new guideline of staying on tamoxifen for 10 years? Also, is 80% considered dangerously high? I feel like I am a walking time bomb. Every time I walk out of my oncologists office I feel so deflated. It just seems to me the risk never seems to subside.

Thanks in anticipation!

Comments

  • smackan
    smackan Member Posts: 47
    edited November 2019

    I just started on Tamoxifen this week but I can tell you that my MO wants me on it for 10 years. My ER receptor is 100% (99.8%) positive so I assumed that is why he is saying 10 years. Also, even though I am 53 I am peri-menopausal so that factors into the timeline as well. However, I only had an 8% risk of it coming back based on my Oncotype score and my stats look similar to yours. I do have a genetic mutation as well, which increases my risk for a new primary as well.

  • flashlight
    flashlight Member Posts: 698
    edited November 2019

    Hi, I'm only 8 months in starting Tamoxifen and I'm postmenopausal. Is it because of your age that you have to continue on the Tamoxifen? Do you still have your ovaries? If you do would you consider having a prophylactic ovary removal to decrease your estrogen? I know if I could loose 20LBS my estrogen level....what is left would decrease. I am considering a hysterectomy and having my ovaries removed in the new year.

  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2019

    I think 10 years is standard of care now. I was told early on I would take it for 10 years. I have a family member who had estrogen positive recurrence 17 years after initial treatment so there's no way I escape the long process of medication.

    My understanding is that the tamoxifen, instead of lowering estrogen, blocks the estrogen receptor sites in the tumor cells. So even if you naturally lowered your estrogen, if you aren't blocking those receptors, it's not protecting you as well as the meds would. You probably can't lower your estrogen enough on your own (without drastic measures like ovary removal or suppression) to starve out tumor cells. But I think even when they take out your ovaries, you still need meds.


  • Lantana70
    Lantana70 Member Posts: 33
    edited November 2019

    thank you. I have tolerated tamoxifen reasonably well although I do suffer from low libido and low mood. I have a little bit of joint pain and hot flushes but I am not sure that canbe attributed to tamoxifen? I am 49 years old and perimenopausal. But did the tamoxifen crudely put me in this zone? One will never know?

    Thank you moderators for changing my category.

    Blessings to all!

  • molliefish
    molliefish Member Posts: 723
    edited November 2019

    I am nearly finished 4 years on tamoxifen, fully er pr positive, no node involvement but a high oncotype result. In May this year my Onc agreed that I would be fine to cut my dosage in half so I take 20 g every second day. I was very happy to hear him say I could be done tam after 5 years. I was told I could be advised to take it for 10 when I first started but I think based on my recurrence scores after chemo with and without tam, he is satisfied that I've received probably the max benefit. I see him in December for what is likely to be my second last, or last visit with him. I will be 5 years from diagnosis March 2020.
  • Lantana70
    Lantana70 Member Posts: 33
    edited November 2019

    Oh you are so lucky! I have a very similar profile to you and yet I have to stay in it for 10 years. I really don’t understand why?

  • gb2115
    gb2115 Member Posts: 1,894
    edited November 2019

    Lantana70, it's probably because that's the newer way to go based on newer research. Probably not all the docs are doing that yet. Mine is, she said it's what they are moving towards.

  • Ameyer
    Ameyer Member Posts: 1
    edited November 2019

    Hi! I'm 38 and have been on Raloxifene since March 2019 (I had stage 1A triple positive cancer). I was worried about the risk of uterine cancer from Tamoxifen, so my doc suggested Raloxifene. Now I'm reading more that it's not approved for premenopausal women (which I am). Just postmenopausal. Any other premenopausal women out there on Raloxifene?

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