Stage 4 NED - continue treatment

Jude2
Jude2 Member Posts: 4
edited July 2019 in Stage IV/Metastatic Breast Cancer ONLY

Hello,

Has any one stopped treatment with stage 4 that is NED? I was initially diagnosed in 2006 Stage 2B lump node involvement ER positive. Four years later in 2011 spread to single bone met treatment zometa and faslodex. No disease progression since 2011. My doctor believes I can stop treatment now.I'm her first patient to go this long without progression. Appreciate any input. Thank you.


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  • BevJen
    BevJen Member Posts: 2,523
    edited July 2019

    I would get a second opinion on this. Also, it could depend upon what type of BC you have. I have ILC. I was initially diagnosed in 2003. Had a single site recurrence in 2006. Took letrozole and was NED after that until 2018, when my tumor markers started rising. I now have mets to my liver, diagnosed in May (so 13 years).

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  • DivineMrsM
    DivineMrsM Member Posts: 9,620
    edited July 2019

    Jude, how great you’ve had a good long run on one treatment. Are you prepared to deal with progression if it happens after stopping treatment? I was diagnosed with bone mets in early 2011 and this year had progression for the first time. It does not feel good, even tho I had a great response to Arimidex. Last year, I even convinced my oncologist to cut scans back from twice a year to once a year, and cutting back zometa from four times a year to twice a year because I was feeling confident. Then a scan in March showed a few new bone mets.

    Of course, it’s your personal decision, but my thoughts are why fix what’s working? Why fix what ain’t broke?


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  • 7of9
    7of9 Member Posts: 833
    edited July 2019

    Devine Mrs M - you bring up a good point. I met a lady who is going on 8 yrs...8 YRS of Herceptin. She had a lung and spine met. NED since surgery and starting treatment. Her heart handles it well for some reason and her husband who does numbers for a big hospital encourages her to keep going - every 3 weeks I believe.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited July 2019

    jude2,

    Congrats on NED! I just hit 8 years of NED. I will never know with certainty why I have done so well, but unless there is some very strong, research based evidence to the contrary, I will continue to swallow that little pill each night. I would feel too insecure not to, and I know I would feel horrible if I progressed after I stopped taking it. That is me, however, and you may feel differently.

    I agree with the other ladies that this seems like a very good time for a second opinion. Take care


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  • Jude2
    Jude2 Member Posts: 4
    edited July 2019

    Thank you all for your reply. I've never heard of stopping treatment with stage 4 even with NED and don't believe I will.My doctor said she will do what I'm comfortable doing but I agree a second opinion is a good idea. My cancer grade is 1 so slow growing and estrogen positive. In 2006 at initial diagnosis I had lumpectomy, 7 rounds of chemo and 33 radiation treatments. Then 4 years later progressed to single bone met. It is hard to know sometime the best course of action.

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  • Moderators
    Moderators Member Posts: 25,912
    edited July 2019

    Congrats on 8 years, Jude2! We completely understand that the worry never goes away, and we second what some others have suggested as far as getting a second opinion. Please keep us posted on what you decide!

    The Mods

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