• What Next for someone told they are cancer free

    Asked by Buddyritz on Tuesday, January 8, 2019

    What Next for someone told they are cancer free

    My wife had 6 chemo treatments. After the second she was told there was NED. We were surprised but cautious about the future. We continued treatments until the end. We now are scheduled to get a PET and CAT scan. She is feeling the effects of all the treatments-very fatigued and unsteady. She has always had a bad back which complicates things. She is using a walker and for long treks a wheel chair. Should we be celebrating or continue to be cautious? The doctor said there would be no follow up treatments if the scans show NED. Thanks in advance for anyone who responds. JOE C.

    6 Answers from the Community

    6 answers
    • po18guy's Avatar

      Sorry to hear of this. Sadly, medical science cannot state with 100% certainty that anyone does not have cancer, only that they do have it. "NED" means either that the lymphoma has been eradicated, or that if there is residual disease, it is beneath the threshold of detection. What to do now? Time for recovery and moving ahead. What to watch for is any sign of recurrence, knowing that every ache and pain will seem suspicious. I would think that maintaining regular contact with doctor/nurse is a good plan, just to keep them apprised of any changes and also to receive any recommendations from them. Which sub-type pf B-Cell Lymphoma was she diagnosed with? I ask because they all seem to behave differently.

      8 months ago
    • GregP_WN's Avatar

      Congratulations on getting to be classified as NED. That is a big milestone. What comes next? Moving into survivorship is a process, we have several articles on our blog page about this. A lot of people think that once we are declared to be "cured", "cancer free", "NED", or anything else they want to call it, that everything is all roses, rainbows, and unicorns. Sadly, it's not. I am a good example of being fortunate enough to be declared cancer free. On the other hand, I have a basketful of side effects that are serious problems, one of them has already tried to kill me by a stroke. As PO says, keep up the yearly checkups, I still get mine after 32 years, and try to enjoy life, but be cautious. We wish you both the best!

      8 months ago
    • cllinda's Avatar

      My hospital had a class for survivors. It was six weeks long and we talked about exercise, diet, finances, sex life and so much more. They also helped us make a strategy for our life now that treatments were over. It really helped.
      There are so many unknowns when you are finished with treatments. And this class helped us to understand some of the questions that are in our minds.

      8 months ago
    • Lynne-I-Am's Avatar

      Both, celebrate and continue to be cautious. There are survivors who never reach NED and are on maintenance for months and years after frontline chemo, I celebrated with my husband when my post chemo CT scan showed NED. Your doctor said NED however and did not use the term cured. Going forward stay vigilent. Follow up blood tests and exams are common for sirvivors, especially the first two years post chemo. About your wife’s fatigue , this is a very common side effect with chemo. Her strength should slowly return. It is important for her to keep slowly but steadily increasing her daily activity to tolerance . Getting up, out and about, is often the best medicine once treatment ends. Wishing you continued better days ahead.

      8 months ago
    • Gumpus61's Avatar

      I am a care giver and we have had the NED declaration 4 times in the last 5 years. That cycle repeating has left us with a simple philosophy. The Bucket list is simply a life well lived, so we live well awaiting the day they say there is nothing more we can do. Perhaps NED might mean this to you. Cancer will not take you this day, this month, this Year........who gets that guarantee ? Approach what is next that way and have a great year !

      8 months ago
    • macfightsback's Avatar

      I have been through having cancer, receiving chemo and then being declared NED twice. I am cancer free now ( as far as I know.). Many people feel weaker and not back to their "normal" as it was before cancer. It takes time to get your strength back. This happened to me both times and I felt more like my old self after a couple of months. I agree with cancer there is never a guarantee it will not return sometime after treatment. I held my breath for 2 years when I was cancer free, fearing reoccurrence. Then it came back last year. I won't do that again! I suggest you both celebrate her NED diagnosis. Start making some plans for fun activities you enjoy. You can start small. I put bird feeders up in my front yard because I love birds. I do some very amateur photography of animals and plants. Next week I am off to a 5 day winter vacation. I have a companion Siamese cat who gives me joy everyday. I treasure good times spent with family and friends. Carpe Diem! Seize the day. Yes, certainly continue to be vigilant regarding your health. Go to your follow up appointments. Report any new symptoms. Yes, sometimes what seems like a symptom of reoccurrence is not. I decided I had melanoma in my left foot because it was a strange lesion I had never seen before. It must have been an insect bite because it disappeared in a week. Your life is changed forever once you are diagnosed with cancer. The secret is that information should not prevent you from finding joy in your life.

      8 months ago

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