High hormone levels- a risk factor?

Lantana70
Lantana70 Member Posts: 33
edited November 2019 in Not Diagnosed With a Recurrence or Metastases but Concerned

Hi all lovely people,

I was diagnosed 5 years ago with multifocal stage 1, grade 2 breast cancer. Both tumours were estrogen positive. One tumour, 2 cm, was 50% positive for estrogen receptors and the other tumour, 1.2cm was 80% positive for estrogen receptors. I have been on tamoxifen for 5 years and despite good prognostic factors my oncologist wants me to continue on tamoxifen as I am extremely hormonal.

She said that 80% is really high and is a huge risk factor for long term recurrence. Is this really true?

Also, what is considered too high in terms of percentages? I’d love your opinions, have you been told something similar or read about this?

I am feeling quite deflated.

Thank you 😊

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Comments

  • jessie123
    jessie123 Member Posts: 532
    edited November 2019

    Well, kind of. I'm old and my tumor was 93% estrogen positive. My doctor hasn't said anything, but from what I've read our tumors feed off the estrogen - does your doctor want you to stay on the tamoxifen to reduce your estrogen?

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  • smackan
    smackan Member Posts: 47
    edited November 2019

    I am 99.8% ER positive, the only thing my MO said is to stay on Tamoxifen for 10 years but my recurrence is only 8% (4% with tamoxifen) based on Oncotype. My MO said being so highly ER+ was good because they have the toos to fight it.

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  • thisiknow
    thisiknow Member Posts: 134
    edited November 2019

    The higher the tumor percentage of estrogen and progesterone receptors, the better. Like smackan said, because now you've got tools to fight it. And if you get a low (<25) Oncotype score, you could avoid Chemo altogether. Are you considering surgery?

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2019

    Yes, it's good in the sense that there are tools to help prevent recurrence. However, not so great in the sense that ER/PR+ breast cancer tends to have a very long risk of recurrence. For some of us that means taking endocrine therapy for 10 years. That is nothing to sneeze at and I'm tired of MOs acting as though it's the same as popping an aspirin everyday for 10 years.

    (Just my .05 cents. Sorry for the rant, but I get tired of people acting as though ER+ breast cancer is a walk in the park.)

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  • Cutie
    Cutie Member Posts: 67
    edited November 2019

    Mine was PR 90% and ER was 0. My MO wants me to take Al drugs which is for estrogen. I am concerned froside effects and can it reduce Progesterone too. As we get old, these hormone decrease and why we need to take it?

    Cutie



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  • Lantana70
    Lantana70 Member Posts: 33
    edited November 2019

    I couldn’t agree more! We’re told estrogen positive is the favourable one to get but a lifetime of risk does not sound good to me. 10 years of tamoxifen will turn into 15 plus yearly visits to the oncologist. So tell me, how do you move on?

    This really sucks

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  • Lantana70
    Lantana70 Member Posts: 33
    edited November 2019

    I am annoyed because I always feel doom and gloom when I visit my Onc. Not once has she said I have a good chance of eating this disease. She doesn’t tell me much and I have to ask questions about my details. She rolls her eyes if I ask questions about natural therapies to use in conjunction with endocrine therapy

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  • Lantana70
    Lantana70 Member Posts: 33
    edited November 2019

    Are you okay Smackan to stay on it for 10 years

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  • Lantana70
    Lantana70 Member Posts: 33
    edited November 2019

    thisiknow, I was diagnosed in Jan 2015. I was only 44. I had a mastectomy, no chemo or radio. Just tamoxifen! I wish I could celebrate the 5 year cancer free milestone but sadly with estrogen positive cancer the risk will linger for at least the next 29 years. Not good when you suffer health anxiety. It’s been so hard mentalky

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  • Lantana70
    Lantana70 Member Posts: 33
    edited November 2019

    cutie, I heard as we age and go through menopause we tend to accumulate more estrogen in our fat cells. Not sure how accurate this is though. My doctor is always banging on about my weight. I think there is a link between obesity and excess hirmones

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  • smackan
    smackan Member Posts: 47
    edited November 2019

    Lantana70, I am not happy about taking Tamoxifen for 10 years and this scares me more than the surgery or radiation did. I am only a week into Tamoxifen so I am willing to try but we will see how it goes. Unfortunately, I found out I have a genetic mutation, Chek2, during all of this so my risks increase with that also. That is why I decided to try the Tamoxifen and will stay on it as long I can tolerate it. But I agree, our risks will increase with age, not decrease. The 10 year timeline does seem to be the new protocol to combat that but I can’t imagine it increases past that with all the potential side effects (blood clots, uterine cancer, etc) that are pretty serious

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