Should I take Tamoxifen for weak ER+

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ALCS97
ALCS97 Member Posts: 14
edited June 2014 in DCIS (Ductal Carcinoma In Situ)
Should I take Tamoxifen for weak ER+
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  • ALCS97
    ALCS97 Member Posts: 14
    edited June 2013

    I am 33 and just completing my radiation treatment and about to meet with a MO to have a discussion about whether to take Tamoxifen. I had DCIS with a weak ER+ (no more than 5% responsive to estrogen) in the pathology report. The surgeon and RO said they will likely suggest Tamoxifen, but I would like to know: what questions should I ask the doctor? I am currently breastfeeding from my non-affected side. I don't plan to have any more children.

    Anybody my age out there who is or has taken this, and/or who has had a weak ER+ diagnosis who decided to/not to take it?

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  • Moderators
    Moderators Member Posts: 25,912
    edited June 2013

    Hi ALCS97,

    We're sure some helpful members will be along shortly to give you some advice. In the meantime, you may be interested in reading the main Breastcancer.org site's page on Questions to Ask Your Doctor About Hormonal Therapy.

    We hope this helps!

    --The Mods

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  • ballet12
    ballet12 Member Posts: 981
    edited June 2013

    Hi ALCS, you might want to post on the hormonal thread with this question (if you haven't already). The reason I suggest it is that on that thread there is a larger audience, and those with Invasive Ductal Carcinoma (IDC) have even more imperative to take tamoxifen than those with DCIS, because with IDC, it protects against metastasis.  So, it is in those situations, when the ER response is  very very low, that treatment decisions can be really critical.  I don't know what the ER response "cut-off" is for treatment.  At one point, I'd heard it was 10 percent response, but I think they look for any positive response.  You are very young, and it sounds like you are post-partum, so your situation may be different from older women.  Your risk for recurrence may be greater.  Did you have BRCA testing? Also, what is the grade of the DCIS?  Family history? Size of the lesion? Etc.  All of these factors come into play.  Also, Beesie recently posted that there is a potential risk of recurrence of ER- tumors with Tamoxifen.  If you are brca positive that might be something that you should really ask the docs about. At the same time, the Tamoxifen does cut the risk substantially (depending on what the original risk is). Best of luck. 

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  • ALCS97
    ALCS97 Member Posts: 14
    edited June 2013

    ballet12, thanks so much for your response. I did post for a couple of days on the hormonal therapy forum with no response, so I moved it over here. It sounds like there are a lot of considerations and I'm hoping my MO will be able to answer many of my questions as well. I might see another MO and get a second opinion; not sure if that will be necessary but five years of taking something seems like I should be sure it's the best choice for me. I had also read Beesie's post which made me wonder even more what the right choice will be for my "weak positive" situation. I had high grade DCIS of about 1.5cm. The surgeon got wide 8mm margins, so that was encouraging news. I had the testing and I am not brca positive and I have one grandmother who died early of ovarian cancer.

    I saw from your signature that you also were treated for high grade ER+ DCIS. Can I ask - is Tamoxifen part of your treatment plan?

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  • april485
    april485 Member Posts: 3,257
    edited June 2013

    ALCS, since you are pre meno and young, I am willing to bet that the recommendation would be to take the tamoxifen. The recurrence thing aside, it also protects your other breast from developing BC. Also, your hormones after having a baby are raging and so I am sure your estrogen levels are pretty high right now. I would err on the side of caution and try taking the tamoxifen and see how you do on it, even with the 5% number. It will offer you at least some protection. It is a drug that has been proven to have tremendous benefits for over 30 years and so if you can hack it, then I would take it.

    Of course, check with your MO and see what they say. Best to you!

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  • ALCS97
    ALCS97 Member Posts: 14
    edited July 2013

    Thanks april for the info. I am getting more and more comfortable with the idea of trying it and will see the MO tomorrow. Tomorrow is my last of 33 radiation treatments. YES!!!

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