• For those who are stage IV and have been told you are done with treatment.

    Asked by CancerNews on Wednesday, September 26, 2018

    For those who are stage IV and have been told you are done with treatment.

    Did they say you are NED, cured, will be on maintenance for life, or how was it described?

    9 Answers from the Community

    9 answers
    • Skyemberr's Avatar

      I was told I would be on long term treatment until they run out of options.

      about 1 year ago
    • JaneA's Avatar

      I had adjuvant chemo after my "potentially curative" surgery. When that was complete, my oncologist told me that I was going to be under close surveillance with the hope that nothing would pop up. That was 3 years ago.

      Sometimes, response to treatment shows up on CT scans as possible recurrences. These have to be sorted out - it's nerve wracking, but it is what it is. Finally, my scans show no evidence of metastatic disease.

      about 1 year ago
    • LiveWithCancer's Avatar

      I never have been told I was "cured," or "NED," or any of the above. I think, like Skyemberr, I will remain in treatment until they run out of options...

      (I spoke to my oncologist about stopping treatment for awhile - just because I get tired of going to the clinic even though it is only once a month these days - and he said, "Well, you're doing really well ... I can't promise what would happen if you stopped treatments." Of course, none of us know. But, I'm not much of a gambler, so I go for treatments!)

      about 1 year ago
    • GregP_WN's Avatar

      Have any of you been told that you will never be NED or cancer free? I've heard people that are stage IV say that before, but I don't see how anyone can declare today, that you will never be NED. Jimmy Carter is an example. He was told NED, he was stage IV melanoma.

      about 1 year ago
    • jillybean56's Avatar

      Greg, yes, even tho I stopped chemo by my own choice because I was just soooo sick, and 3 months later, doing okay. Had a breast surgeon first tell me this is stage 4, metastatic. There is no cure, no surgery unless it would be palliative, no radiation. Maybe oncologist would help buy you time. So I did, for 4 months, but I simply got worse by the day, even tho she told me I was better. After getting my records, was simply not true, the chemo was affecting my liver and spleen, she never told me. So glad I opted out. After much research, and not just chit chat rooms, but scientific research, I know my cancer is not curable. My onco even told me this over and over, and that the chemo was just buying time. But at what price, I asked her, I feel horrible...well, she said, do you want to live longer or do you want to die sooner? Horrible experience with her. She even said well, if you don't want to take this chemo, wait til you see what I put you on next, you will be REALLY sick. Can you believe that? We parted ways and I am now on home hospice and feel so much better. Onco would not even give me anything much for pain, she actually said quote "breast cancer is not painful." Implied I was only looking for narcotics. And wrote in my records. When my hospice nurses and doctor came out to see me, they darn near fell on the floor. Yes, I now have narcotics, they gave me 5 days worth to start, and now in day 5 with several days of meds left. Jeepers, just want to feel normal, not drugged. But yes, was told by both the breast surgeon and the onco that yes, this is incurable, can maybe get you to where you are not in active disease, but the mets can be so tiny, they are not detectable. No NED, just not progressing. The breast surgeon was the best, she was very honest and I demanded that she be honest, and she was, kindly. Onco was another story for another day, but even tho I also demanded she be honest with me, she never was. Everyone has to make this decision eventually I suppose. I elected to have more quality of life rather than quantity, and am at peace with it. Simply could not tolerate the tx, almost from day one. When you have the abominable snowman handing you the towel when you step out of the shower (with no pain meds), it's time to rethink. Just my experience, do hope tx helps others. Was just not for me. And it's okay.

      about 1 year ago
    • SandiA's Avatar

      Basically I was told my scans look good. They never used the term NED, but that’s what I call it. I did ask him at one point was I cured and he said no. Basically I am being scanned every three months.

      about 1 year ago
    • BuckeyeShelby's Avatar

      Because I had such weird stage IV, with my mets wandering from uterus only as far as my omentum, both medical & surgical oncologist said cancer free. Stage IV but only grade 1.

      about 1 year ago
    • abrub's Avatar

      NED for 9 years, then recurrence, surgery, and another recurrence. Waiting until next surgery (which we're postponing as long as possible). No more chemo for me.

      about 1 year ago
    • Sparkplug's Avatar

      What is tx?

      about 1 year ago

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