Drusen of Macular after taking Tomoxifen

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blessedandhighlyfavored
blessedandhighlyfavored Member Posts: 4
edited December 2017 in DCIS (Ductal Carcinoma In Situ)

I was diagnosed with DCIS a year ago, (ER/PR positive) and have since been taking Tamoxifen. My eye specialist just noticed that I have crystals on my macular (drusen of macular). So I have stopped taking tamoxifen and wondered if anyone else has had a similar experience or could give me advice please. My Oncologist wants to change my medicine to Letrozole, but I am worried as I have read that this also can affect the macular. I was thinking that Raloxifene would be a better one to take as this seems to not affect the macular from what I have read, although it says its not really for patients who have had DCIS. My oncologist says she will prescribe me Raloxifene if I won't take Letrozole, although Letrozole would be her first choice. I also have had back trouble before with bulging disks etc; so was trying to stay away from AIs which can make it worse. I would be thankful for any suggestions.

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  • jwilco
    jwilco Member Posts: 486
    edited December 2017

    Hi, I'm sorry you are dealing with this side effect. Actually I also have drusen, I think it was noticed around the time I started tamoxifen, so I'm not sure the two are related. I'm thankfully finished my years on tamoxifen. But I am very curious to learn more of the relation between the two. I never thought that tamoxifen could be the cause, or even impacting my eyes.

    I hope others comment with their experience so we can learn more.

    peace,

    jen

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  • blessedandhighlyfavored
    blessedandhighlyfavored Member Posts: 4
    edited December 2017

    Hi Jen, Thanks for replying, I'm sorry your dealing with drusen too. I had a check of my eyes before starting tamoxifen and the maculars were clear but after one year of taking tamoxifen is when the drusen was found, so I googled it and found a lot of information about tamoxifen and macular drusen. I was wondering how is your drusen now and did it get worse after the five years of taking tamoxifien or stay the same?

    God Bless,

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  • jwilco
    jwilco Member Posts: 486
    edited December 2017

    Hi, I'm now trying to figure out when it was first discovered. Right now it's dry, so that's good. But it has shown more over time. I'll post again once I check the date it was discovered.

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  • MTwoman
    MTwoman Member Posts: 2,704
    edited December 2017

    Blessed, is it possible to have your eye specialist and your MO consult with each other? That could give you the best recommendation taking both your eyes and bc follow up treatment into consideration.

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  • blessedandhighlyfavored
    blessedandhighlyfavored Member Posts: 4
    edited December 2017

    Thanks. It's good that you completed your years on Tamoxifen. I've decided for now to go back on Tamoxifen, but keep a close check on the eyes, and if they get worse then switch from Tamoxifen.


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  • blessedandhighlyfavored
    blessedandhighlyfavored Member Posts: 4
    edited December 2017

    Thankyou, that's a great idea, I do plan on checking into it further and seeing an eye specialist who focuses specifically on the macular.


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