Questions before starting hormonals?

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Wigging2000
Wigging2000 Member Posts: 295
edited February 2019 in Hormonal Therapy - Before, During, and After

I have my MO appointment on Tuesday the 15th to discuss my Oncotype results. If the decision is that I do not need chemo, I will immediately start tamoxifen or some other hormonal treatment. Do any of you have advice for questions I should ask before starting the meds? What, if anything, do you wish you'd asked?

I'm going to ask this same question in the chemo section, in case I need to ask chemo questions! So much to try and be prepared for!

Since all this "fun" started in October, I've felt very supported by this forum and found that I've gotten great suggestions of things to ask at my big appointments.

Thank you, friends!

Edited to add...I’m 45 and premenopausal:)



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  • AliceBastable
    AliceBastable Member Posts: 3,461
    edited January 2019

    How old are you, and are you pre- or post-menopausal? Because that will be the major determining factor for which anti-hormonal you will get, an AI or Tamoxifen. Each has their own side effects, so we can help you better with questions if we know which one you're most likely to get - although there are exceptions to who gets what pill.

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  • Moderators
    Moderators Member Posts: 25,912
    edited January 2019

    Hi wigging!

    Great questions -- you should get some more good responses here soon, but we wanted to share with you this page from the main Breastcancer.org site on Questions to Ask Your Doctor About Hormonal Therapy.

    We hope this helps!

    --The Mods

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  • Wigging2000
    Wigging2000 Member Posts: 295
    edited January 2019

    thank you!

    Added that info above for future readers. I’m 45 and premenopausal at the moment 😉


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  • TessaW
    TessaW Member Posts: 231
    edited January 2019

    I was on such pain with Arimidex I was using my grandmother's Walker to get around.

    I had been born with Cerebral Palsy and was told I had a ridiculous amount of arthritis throughout my body but never had to use a walker until Arimidex.

    Went off all AIs for a while due to losing my insurance and 40 lb dropped off in 8 weeks. No exercise. Just stopped AIs.

    I went from the 160s down to the 120s and as soon as I started them up again went from the 120s right back up to the 150s.

    So don't be surprised if you notice weight gain no matter what you do.

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  • FaithFilledGirl
    FaithFilledGirl Member Posts: 17
    edited February 2019

    Hi, Tessa - I have spastic dysplasia cerebral palsy with mobility issues and osteoarthritis and was just diagnosed with early stage IDC last month. I'm 2 weeks post lumpectomy and waiting for further test results and looking at potential hormone therapy as well.

    As you know, getting around with CP and maintaining weight can be a challenge, so I really appreciate your insight on mobility issues & weight issues when CP is also a factor. Now I know what questions to ask when discussing this hormone therapy further down the road. Hope you're feeling better now.

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  • MnM-Pen19
    MnM-Pen19 Member Posts: 2
    edited February 2019

    I'm not even sure if I'm using this forum correctly. I'll just post this reply to the "starting hormonals" message that was posted.

    This is my first post. Is this the correct way to post my first message? I'm confused.

    Anyway, I was diagnosed a month ago - with Invasive Moderately Differentiated Lobular Carcinoma Nottinghanm Grade II.

    Right breast, and at least one lymph node affected. Maybe more. My oncologist put me on hormonal therapy - Lexaprole - and said that is the effective therapy for my bc (at this point anyway). More effective than chemo to inhibit the estrogen that is - am I saying this right? -invading or "feeding" the tumor. Ive had other scans & MRI's & will have 2 more MRI's next week. It has probably spread but I'm told it is still very treatable and it is still breast cancer - even if it's in a bone - or more. Eventually when tumor shrinks enough I will have surgery than radiation. I'm 73. Very healthy otherwise. I am hoping for support, and if I can be supportive & share any knowledge I would be happy to do that. Do not want a forum with scary or negative posts. Thank you.


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  • Salamandra
    Salamandra Member Posts: 1,444
    edited February 2019

    Hi MnMPen,

    When you post on a thread it bumps it in recent activity, and people who are following the thread also get notifications. So definitely feel free to add onto whatever threads you feel 'fit' for what you are looking for. You can also start your own new thread.

    Lobular carcinoma is different enough from IDC that it may be worth posting on an LC specific thread, if not the LC forum, to make it more likely that people with your diagnosis will see it and respond.

    Sending supportive thoughts!

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  • MnM-Pen19
    MnM-Pen19 Member Posts: 2
    edited February 2019

    Thank you! Very helpful. What link do I use to start my own new thread?

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  • Salamandra
    Salamandra Member Posts: 1,444
    edited February 2019

    Here is the link for the topic: ILC (Invasive Lobular Carcinoma)

    (You could also get to it by clicking "All topics" on the left sidebar menu).

    Near the top there is a button "Start a new Topic" - that's what you click on to start your own thread.

    Good luck! I've found this forum incredibly helpful and supportive.

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