Reminder: where does ILC usually want to recur?

Anonymous
Anonymous Member Posts: 1,376
edited November 2016 in ILC (Invasive Lobular Carcinoma)

All, I need a refresher--from my memory I thought I read here somewhere that ILC, if it recurs, is "more" likely to recur in soft tissues, not bones. Am I remembering that right?

I ask because my MO wants me to start taking Prolia (bone-builder shot given 2x year). I had some mild osteopenia in my spine show up last DEXA scan, due to the AI I'm taking. The report said "no other treatment needed", but she wants me to start Prolia because she also says it protects bones from mets (added potential benefit). But I remember with ILC it usually doesn't go to bones.

I'm not sold on Prolia and am sick of having to take more and more drugs to counteract the s.e. of exemestane, which I'll likely be on for 8 more years or so. And there are side effects from Prolia, and I'm skeptical about taking it, but torn, as you can see.

I get calcium, weight-bearing exercise, I don't smoke, I don't drink to excess, and I'm not a petite/small boned thin woman prone to osteoporosis; neither are my relatives.

Thoughts?

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  • wallycat
    wallycat Member Posts: 3,227
    edited November 2016

    After reading the NPR article on how osteopenia was "defined" and the parameters set, I am less enamored with treating something that may not be a real issue.

    Calcium supplements have been shown to do little for bone health and may increase heart disease, so I stopped taking those.

    If you are not carb sensitive, prunes have been shown to build bones up.

    As for where it tends to recur...I think it is a crap shoot. My understanding, such as it is, that of the breast cancers, ILC "can" go to soft tissue...whether that is the first place it picks, I don't know. Hope someone else posts.

    Good luck with your decision. I've been declining DEXA scans for the last couple of years for fear they would want to treat me.....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Hi Wallycat, I am afraid of immune system disorders with this drug--reported--and that it causes weird jawbone problems and weird femur fractures. As active as I am, this concerns me.

    I'm mostly vegan--don't drink milk or things like that. I always felt like I got more than enough calcium, and I believe that lack of calcium doesn't necessarily cause osteopenia anyway. I get calcium from eating ex. strength Tums--2 every night, b/c of heartburn issues from...you guessed it, drugs. My naturopath said I could take Vit K for immune system stuff, but that just means more supplements that I have to buy to alleviate any side effects from this drug.

    I'm just not convinced the protection outweighs the side effects. But a dx with + nodes-- I'm always, always scared.

    Claire



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  • Lily55
    Lily55 Member Posts: 3,534
    edited November 2016

    Magnesium and Vit D3 are more important than calcium, my understanding is ILC likes to go to peritoneal cavity.....but it can go to bones too......I am with you on not taking more chemicals to counteract side effects but I do take various natural supplements........and Boswellia twice a day does help a lot with those....

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Hi Lily55, thanks for reminding everyone of that. I didn't write that I've taken mag and Vit D for years. My D levels are checked at least once a year since BC, and the last two readings were 67 and then 57 (I didn't like that lower # so I'm bumping it up a little). Living in AZ I get plenty of sun exposure, which is also important in moderation, so I don't use sunblock unless I'm going to be out for more than 30 min and then I bring it along.

    If anyone has a study of mets for ILC showing some stats on soft tissue involvement vs. bones, I'd appreciate the link. A quick but not exhaustive search has yielded nothing for me.

    I also re-read the NPR article and I needed that reminder. I had initially read up on osteopenia but that NPR link was a good one.

    http://www.npr.org/2009/12/21/121609815/how-a-bone...

    Damn those + nodes. Every time my "high risk" is brought up, I feel like I have to run scared to whatever is suggested but I don't like that feeling at all--I feel manipulated, and just because a drug is there, does it mean we have to take it? Are we protecting ourselves too much at the expense of other scary side effects?

    Claire

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  • grandma3X
    grandma3X Member Posts: 759
    edited November 2016

    Claireinaz - mets from ILC occur most frequently in bones, same as IDC. However, the frequency of mets to soft tissues is higher for ILC compared to IDC (but still lower than in bones).

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2016

    Maybe I'll get the Prolia shot then. I have a meeting with my NMD this month, then I have dental work next month so perhaps I'll schedule for the month after. Geez. Do we ever get off meds instead of adding more?

    Claire

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