Other options besides Tamoxifen for premenopausal women?

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Jill_MN
Jill_MN Member Posts: 23
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I had a lumpectomy which showed DCIS, grade 2 (with comedo necrosis). Because I want to avoid radiation, my surgeon did a re-excision to obtain clean margins all around of at least 2.5 mm (some were 8 mm). My plan was to start Tamoxifen as a preventative. However,  I was tested for the enzyme that metabolizes Tamoxifen and my body shows very low activity of the CYP2D6 enzyme needed.

I don't want to take a drug that is NOT likely to benefit me (and I'm concerned about side effects). I've talked to my oncologist several times and she doesn't have any other suggestions for me besides trying the Tamoxifen.

Are there other women in this situation? If so, what have you done? Has anyone negated their ovaries (chemically or surgically) in order to simulate menopause in order to use the aromatase inhibitors (Arimidex, Aromasin or Femara)? It seems extreme but there aren't many options out there. Perhaps I should do nothing and just be vigilant about mammograms and MRIs.

I should also mention I have 2 sisters who have had mastectomies...no one has tested positive for the BRAC1 or 2 genes.

Thank you and God Bless.

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Comments

  • ej01
    ej01 Member Posts: 155
    edited July 2012

    Look on the Alternative board and there are threads about DIM.  It is a natural suppliment that is supposed to help balance the estrogens in your system without the side effects of Tamox.    Other than that I dont know a bunch about it, and although the theory about how it works sounds compelling, I am not sure it there are many definitive studies showing its benefit.  I did not take tamox and thought about taking DIM instead, but opted for taking nothing. 

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  • Letlet
    Letlet Member Posts: 1,053
    edited July 2012

    I could not tolerate tamoxifen after 9 months so my onc prescribed Fareston....there's a thread here on it if you do a search. fYI i am 33

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  • SJW1
    SJW1 Member Posts: 244
    edited July 2012

    Jill,

    According to Dr. Michael Lagios, a world renowned DCIS expert and pathologist: "It is understandable that patients would be confused by the information and misinformation, but the fact remains that radiation therapy for DCIS has a limited role, and that tamoxifen has no certain role at all."

    This is based on recent studies that show at best a 2 percent absolute recurrence risk reduction with tamoxifen. Check out the perspectives section on his website to read more about this:

    http://www.breastcancerconsultdr.com/perspectives/contradictory_treatment/contradictory_treatment.html

    Almost anything you choose to do for prevention can give you this benefit without the side effects. Minimizing drinking, exercising, limiting red meat and eating your veggies everyday, taking DIM, supplementing with vitamin D, taking bio-identical progesterone, etc. are just some of the ways you can be pro-active.

    If you are interested in exploring any of these, send me a PM and I will be happy to recommend books you can read.

    Also do you know your risk of recurrence without taking tamoxifen? If it is low to begin with, you might feel better about not electing to take it. (mine was only 4 percent, so I opted out of both radiation and taking tamoxifen). You can use the Van Nuys Prognostic Index to calculate this.

    Best,

    Sandie

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  • CTMOM1234
    CTMOM1234 Member Posts: 633
    edited July 2012

    I was given the option to take or pass on tamoxifen, and I chose the pass. Just didn't think the benefits of going from something like 95% chance of no recurrence in 5 years to a 97.5% chance of no recurrence in 5 years was worth the downsides of the drug -- but those were my personal statistics. I did consider it for the potential benefit in the other breast, but just do not like messing with my hormones. Or for that matter, taking any prescriptions. I'm in my 40s and still pre-menopausal and have instead chosen to make a few little healthy changes (I've added a baby aspirin, blueberries, and broccoli to my daily intake). I tested negative for BRCA1/2 and hence decided to keep my ovaries and just have inner peace with my decisions to date. Other than an annual diagnostic mammo and ultrasounds, I don't really do anything related to bc except go on this board...and I like it that way.

    May you have good inner peace with whatever you decide. 

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  • Missliteeyes19
    Missliteeyes19 Member Posts: 6
    edited June 2013

    How did that work the other drug?

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