Any grade 2 ILCs not doing tamoxifen?

wallycat
wallycat Member Posts: 3,227
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I am curious how many grade 2 gals opted out of chemo and tamoxifen and are happy with their decisions (or not).

 I'm thinking of going off the tamoxifen.  My ankle/achilles pain is just maddening, plus the uterus/ovary worries.

I'm thinking about asking for Evista.  Yes, I know it has not been approved for recurrence issues, but at least one of those side effects is stronger bones.

Just venting.  Thanks for listening.

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  • idaho
    idaho Member Posts: 1,187
    edited March 2009

    Hi wallycat.  I am grade 2 IDC and I opted out of chemo, still thinking about the tamoxifen.  I am happy with my decision, I have cleaned up my act significantly and am hoping that makes the difference in reoccurance.  I am so relieved to hear that I am not the only b/c person that has decided against chemo.  I am thinking of having ovaries removed so I don't have to take tamox.  Our Dx's look about the same except I am IDC and you are ILC. I had a lumpectomy and  I start radiation next week.  Did you do radiation?  Soft hugs.  Tami

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  • wallycat
    wallycat Member Posts: 3,227
    edited March 2009

    Idaho/Tami,

    I did not do chemo or rads.  I had a bilateral mx right after my lumpectomy (warned my doc that was the way I'd go).

    ILC has so many "issues."  I wish it were more studied....ah well.....maybe I will think about a lupron shot as well; always something to think about.

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  • paige-allyson
    paige-allyson Member Posts: 781
    edited March 2009

    I'm doing Femara, initially I got Lupron too, until my oncologist was satisfied that I was really in menopause and was going to stay there. I had some initial aches and pains but now they're pretty much gone. From what I've been reading about ILC, Femara and other AIs are the way to go. Women with ILC also get more survival benefit from hormonal treatment than from chemo- nice to be able to do both (well not exactly nice, but you know what I mean) but if you had to chose you wouldn't want to skip the hormonal treatment.

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  • harvey
    harvey Member Posts: 103
    edited March 2009

    I had grade 3 stage 3 ILC and took the chemo - but stopped Arimidex after 6 weeks. The pain in my joints was horrid - also I was so confused my family stopped me driving.

    I was offered Tamoxifen - however it too would have caused joint pains and a degree of confusion.

    I'm three years past dx and over two back working full time.

    For me this is the right choice as I am the main bread winner.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2009

    my mom had ILC--lumpectomy, radiation and tamox (tolerated well) --is now a survivor of over 22 years without a recurrence.  I have LCIS--just finished my 5 years of tamox which I also tolerated well--now taking Evista.

    Anne

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited April 2009

    Hi wallycat!  I have been on Tamoxifen for 3 years and am having HORRIBLE head sweats, night sweats and hot flashes. Have been thinking about tossing the ol' Tamox bottle and switching to a natural/organic alternative - known as i3c. A good friend - who knows EVERYTHING - about natural remedies has told me that if she was instructed to take Tamoxifen, she wouldn't, but she would take i3c. I really trust her knowledge. So...you may want to consider it too! I hope your aches get better soon. Best wishes. Here's a couple of sites/info:

    http://www.newhope.com/nutritionsciencenews/NSN_backs/Apr_01/I3C.cfm

    http://organicpharmacy.org/search.php?searchterm=Indole-3-Carbinol&x=8&y=19&gclid=CIu6zJr50JkCFSAgDQodWE9TXw

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  • Blondee
    Blondee Member Posts: 18
    edited April 2009

    Hi wallycat. I am grade 2 and didnt do chemo or radiation. I wa taking tamoxifen for 5 weeks but couldnt tolerate the side effects so my doc took me off. I have been in remission for 8 years with no problems but then again everyone is different. Hugs to you.

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