DCIS, SMX and Possible Tamoxifen

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buffyjc
buffyjc Member Posts: 61

Hi all! I'm having a very hard time deciding if tamoxifen would be beneficial for me and was hoping to find some helpful insight, opinions and/or general compelling info either for or against.

Having had DCIS and SMX, I met with a MO yesterday and he didn't recommend it for me. He was extremely thorough and offered a fair amount of statistical data but in the the end, again didn't recommend it for me. He said that even if his wife were the same age as me (41), had the same DX (pure DCIS 5.5 cm @ surgery) and ER+/PR+, he wouldn't recommend it to her either. I do understand it isn't the typical or, standard, treatment for mastectomy patients and instead is more often recommended for lumpectomy and rads patients. He did, however, say that he would happily write the script for it and support my decision should I choose to take it, even if temporarily to see how my body adjusts to it

I'm feeling very 50/50 about whether or not to take it. Being 41, I have a slight concern of a new DX in the contralateral breast at some point in my lifetime and because of this, I feel I *need* to take it so that if it does show up, I can at least know that I tried everything I could. On the flip side, I'm terrified about the increased risk of uterine cancer and blood clots (my paternal grandmother dealt with them for as long as I can remember it to mention numerous heart problems). I feel like I can handle the hot flashes but being premenopausal, I'm probably being far too optimistic.

The other small tidbit of info and again, didn't seem like a huge concern to the MO, my mom was DX with DCIS and IDC in 2006 at 59. She's a 10 yr survivor with no recurrence or new DX and did not take tamoxifen following her treatments (lumpectomy, rads and chemo).

Having said all that, if all this was YOUR situation, what would you do and why?

Thanks for any suggestions!

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  • Beesie
    Beesie Member Posts: 12,240
    edited May 2017

    buffyjc, because you had DCIS, the rationale for taking Tamoxifen after a MX is different than if would be if you'd had invasive cancer. That's important to keep in mind if you get any responses here from women who may offer up a perspective (that may not be relevant to your situation) based on an invasive cancer diagnosis.

    My situation was quite similar to yours, although I did have a microinvasion in addition to lots of high grade DCIS. The discussion I had with my MO sounds like it was exactly the same as the discussion you had. While I was uncertain at first about my MO's recommendation that I pass on taking Tamoxifen, in the end, after doing a lot of my own research, I ended up agreeing with him. That said, it seems to be about 50/50 in terms of whether women who've had a single MX for DCIS choose to take Tamoxifen or not.

    There was a discussion about this recently in the DCIS forum. Take a read through this; I think you'll find it helpful:

    Topic: No Tamoxifen after UMX? https://community.breastcancer.org/forum/68/topics...

  • buffyjc
    buffyjc Member Posts: 61
    edited May 2017

    Thank you, Beesie! Your reply and the link to the other thread are both very helpful!

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