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Question about ned and recurrence

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goldcity
goldcity Member Posts: 54
edited June 2022 in Stage III Breast Cancer

Wasn't sure where to post this. I know (or rather I've heard) that in general, recurrence rates run about 30%. I was wondering if you were ned with stage 4, would your chances be the same as if you were ned with other stages? I call myself stage 3, but my doctors refuse to pin it down and just say advanced cancer. Can't pin it down clinically. Either way my latest scan showed stability throughout and I was just wondering what my chances were. I realize there are a lot of different factors, but just in general.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited June 2022
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    goldcity,

    I am not sure if I am interpreting your question correctly but I’ll try to answer it as best as I can. I think NED or NEAD (many of us stage IV members still show artifacts of our mets but they can be inactive due to tx). This state is temporary for most of us and it represents only one’s current state, i.e. what your last scan/test indicated. NED can change in a heartbeat. It provides no promises regarding the future nor is it related to set periods of progression free time. One person can be NED on a scan today and have progression a month later. Another person, in similar circumstances, can be NED today and not progress for an extended period of time. NED is a description of one’s state when the scan/test was done but is not predictive of the future. When you ask if your chances would be the same as other stages, what do you mean by chances? Stage IV is incurable and most will die. There are a small number who survive for extended periods of time but no one is quite sure why this happens. I am about to hit the 11 year mark with mbc and no progression yet why I have done well is unknown. Hope this helped.

  • goldcity
    goldcity Member Posts: 54
    edited June 2022
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    OK, so ned is a temporary state and only applies to stage IV. So, since you are stage 4 you won't have a recurrence because it has never gone away. Just lays there doing nothing until it decides to move on. Is that right? Recurrence is only for stages 1-3? I'm talking about a recurrence of your original cancer.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited June 2022
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    goldcity,

    The majority of stage IV patients found their original bc in their breasts*. A recurrence in the breast is not the concern since you do not die from cancer confined to the breast. We worry about progression to vital organs outside the breast, most often bone, brain, lungs, liver, as those can kill us. And yes, you are correct. Our horse has already escaped the barn. Our mets are found and we do what is necessary to control them. Some are never controlled, some controlled for shorter or longer periods of time but the reality is that the vast majority will die from mbc.

    The two things I want to emphasize are that recurrence in the breast, local recurrence, is not terminal as breasts are not vital organs. I don't know any stage IV patients who are concerned about local recurrence since it's mets that are the problem. The main point of early stage tx is to make sure no cancer cells have escaped to later take up residence in the vital organs mentioned above. NED/NEAD is not predictive of how the disease will or won't progress but it is important to us because the goal of most stage IV tx is to slow progression down since there is no cure. Those who have outlived the statistical models are very lucky because there is no real explanation for why this happens to a small number of patients. Despite being NEAD for almost 11 years, I still have mbc and chances are great that my luck will run out at some point.

    No one wants a local recurrence since it still involves tx but it's metastatic recurrence that's the worry. BTW, many who are dx'ed as stage IV from the start never have their breast tumor removed as the focus of tx is to tamp down disease in the organs to which it has metastasized. Also, I do not know if NED is a term used at lower stages since I was de novo stage IV but as I mentioned earlier, it has no predictive value as it is literally a snapshot of a point in time. Take care

    * Some de novo stage IV patients have never had their breast tumor found, though this is not common. Testing of the mets, regardless of which organ they’re found in, shows breast cancer not bone, lung or any other type of cancer.

  • goldcity
    goldcity Member Posts: 54
    edited June 2022
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    Thanks for the clarification.

  • mpetago
    mpetago Member Posts: 54
    edited June 2022
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    I've always used NED in the same way as the term remission as opposed to 'cancer free' or 'cured' because there is no such thing really. We can always have a local or distant recurrence, regardless of stage at diagnosis.

  • exbrnxgrl
    exbrnxgrl Member Posts: 4,955
    edited June 2022
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    I agree and NEDis generally accepted as a synonym for remission. At stage IV it takes on a very different meaning as for the majority, NED is temporary or intermittent as new treatments are tried. Yet the ugly reality is always there… it will be terminal.