DCIS and DES daughters

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Suembala
Suembala Member Posts: 18
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

Has anyone struggled with treatment decisions because of DES? It will be a month tomorrow that I was diagnosed with papillary DCIS and I just can't seem to make a decision about treatment. I go round and round. One minute I think I'm "ok" with the lumpectomy/radiation/hormone therapy option.  The next I'm thinking mastecomy. One reason I think I'm struggling to decide is a fear I have that relates to my DES exposure in utero. Some experts are recognizing an increased risk for BC in DES daughters that are now reaching or have gone through menopause. DES already increases the risk for cervical and vaginal cancer, but I have lived with that knowledge of increased risk the same way I lived with the risk of getting hit by lightening. Unfortunately, now I feel like I have been hit by lightening and everything has changed. With DES increasing the odds I'm worried about keeping my breasts and taking Tamoxifen and it's potential uterine side effects.  When I've asked my doctors they just say hmmmm, DES is a factor...  If only they had a crystal ball!!! It's probably an unanswerable question and one I'll have to give over to faith, but thanks for letting me vent my fears and my heart goes out to you all.  

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  • IronJawedBCAngel
    IronJawedBCAngel Member Posts: 470
    edited March 2010

    I am a DES daughter, but I can not say it has been a factor in any of my treatment decisions.  Just wanted to say that having a mastectomy should not impact the need for tamoxifen or an AI.  There is still breast tissue left on the chest wall and if you are hormone positive, you still need adjuvant therapy.  I have several friends who have had mastectomies and not one was told that they didn't need the hormone therapy.  Some have opted for an ooph so that they could go directly to an AI.  I had some abnormal bleeding about 8 months after, enlarged uterus and polyps, so I chose to have a complete hysterectomy.  However, I am still on tamoxifen and will finish up my five years in July, then I will be switched to an AI.  I think your fears are understandable, just do your research and make the best decision for you. Do not make decisions out of fear.

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  • Suembala
    Suembala Member Posts: 18
    edited March 2010

    Thanks for your thoughts JennSmith58.  Sorry that you're a DES daughter too.  You may already be aware of this organization, but I thought I'd pass it along just in case.  It's called DES Action USA.  I contacted them about the possible existence of any research or studies pertaining to DES exposure and tamoxifen use.  Anway, I'm glad that you're doing so well and I'm trying to take your advice and not let fear enter the equation in making my decisions.  Right now it just seems so hard to do. Thanks again.

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