No estrogen inhibitors?

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AmeliaPond
AmeliaPond Member Posts: 8
edited January 2020 in Hormonal Therapy - Before, During, and After

Has anyone ever just not taken any estrogen inhibitors? I took Anastrozole 3 years ago and had awful, awful side effects, including a rash so bad that I have scarring from it. Exemestane was the same deal.

I was re-diagnosed in October and started tamoxifen in mid-December, after my surgery, and almost immediately had nasty side effects again - bed-drenching night sweats (seriously, I needed to get additional sets of sheets), stabbing pains in my thighs, joint pain, including in my elbows, which, whut?? crushing fatigue, and a headache that won't go away. Yesterday my onco said to stop taking it and we'll discuss options when I see her next week.

It seems like the only option left is letrozole, which has scary side effects. I am someone who gets a ton of side effects from a ton of meds, so I'm nervous, especially after reading that cardiac issues are a common one, as well as depression, rash, joint pain, all the stuff I had with the other three meds I tried. I don't know what my odds are if I just refuse medication. I also don't want to live with these side effects. One month in with tamoxifen and I'm ready to crawl into bed and stay there and I can't live like that.

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  • Beesie
    Beesie Member Posts: 12,240
    edited January 2020

    Lots of people had decided to pass on endocrine therapy, particularly those who have low risk diagnoses.

    What is your diagnosis?

    As for "I don't know what my odds are if I just refuse medication", this is information that your Oncologist should be giving you - you need this information to make an educated decision. You also need to know what your odds are if you do take endocrine therapy, because then you will understand the amount of risk reduction you'll get from this treatment, and you can decide whether it's worth it to you.

    While getting the information from your oncologist is best, these two models might help you figure this out:

    https://breast.predict.nhs.uk/

    http://www.lifemath.net/cancer/breastcancer/therapy/ Where is says "Display As" on the right hand side, select "Pictogram", because that provides the easier to understand results.


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  • AmeliaPond
    AmeliaPond Member Posts: 8
    edited January 2020

    Thank you, I'll look at those when I get home.

    My dx was invasive lobular carcinoma, but it was caught pretty early. It's ER/PR positive, HER-2 negative. I believe I'm a stage 1b - no lymph node involvement that they found. I don't have an oncotype because they didn't do one. I've had a double mastectomy.

    I will be seeing the oncologist next week and will go over all this with her.

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  • Yogatyme
    Yogatyme Member Posts: 2,349
    edited January 2020

    Amelia, after researching all the side effects of AI’s, using the online tools that Beesie shared in the post above, looking at what I have done to reduce estrogen (BMX, Oopherectomy, stopped HRT, low BMI) I decided to not even start an AI. It only improves my risk of recurrence by 1% and, like you, I am prone to have exaggerated SE’s from meds (a vitamin on an empty stomach doesn’t have a chance of staying down) and I felt the risk of potential SE’s from an AI were greater than risk of recurrence. It is not an easy decision, so get all the information you can and make the best decision for you. Hoping for the best for you.

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  • jessie123
    jessie123 Member Posts: 532
    edited January 2020

    Me too -- I haven't taken them yet and my surgery was almost a year ago. Those charts and my oncotype score shows the Al's will only give me about a 3% advantage. However, I have one other problem that I'm concerned about that none of the tests take into account ---- that is the LCIS they found during my lumpectomy. So I'm still trying to talk myself into the pills -- but just haven't yet.

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  • AmeliaPond
    AmeliaPond Member Posts: 8
    edited January 2020

    Well. After looking at both of those pages, it seems like any AI will only increase my chances by 0.6%. I think I'm going to refuse any other suggestions.

    I've only been off tamoxifen for 4 days but I already feel so much better. No headache, except the normal end of day ones I get after being on a computer all day. No stabbing pains in my legs, no joint pain, no crushing fatigue or depression. I was only on it for a couple of weeks, so the side effects didn't have much of a chance to really dig in.

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