ned and still stressed out!

I should be so happy that my numbers are normal and the scan looks clear, I don't know how to stop thinking that the next scan will be clear,i have or had lung cancer stage3 and now he says its stage 2 I felt he should of been more excited for me (myoncologist) but maybe he doesn't want me to get my hopes up! my husband died 7 years ago from lung cancer and he was never told he was ned so I guess I need to be happy


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15 Replies

  • Welcome to the free to breathe community. I did not see any previous posts so assume this is your first time. I think that the concern and anxiety over what the next scan will show is universal here. We all face the possibility of recurrence, spread or worsening of our disease. There is no right or wrong way to feel or react. We each react in our own ways. For me the best way to handle the uncertainty is to stay in the present moment as best as I can, use distractions, spend time with family and friends and knit. Of course, for me prayer helps too. You will find what works for you.

    This community is a wonderful place to share and learn. We learn from each other. It is also a great place to express thoughts and feelings we are hesitant to share with family and friends who have not faced lung cancer. I hope you are comfortable continuing to share with us. Our journeys may be different, but we also have many shared experiences.

    I hope this helps.


  • thanks jean im just going to try to life one day at a time

  • Jean,

    Thank you. Your words, like the rest of this truly kind community's words, are wise and sincere...based on personal experience. It strikes a nerve because it comes from what you have lived through, what you have survived by sheer inner strength and determination. Thank you again, for being generous with what you have felt and endured and conquered. I am just so very grateful for your wisdom and the wisdom of every one here who so generously and openly shares their thoughts and advice and experiences. That takes so much courage to cast aside your own feelings and share so others know what might happen to them. Bless you all. You are the best that we, as humans, can be. It is a privilege to be here with you.

  • Scanxiety is a common feeling among lung cancer patients, and it is hard to celebrate NED when the future is so unknown.

    scifiknitter, our Blogger on HealthUnlocked, created a great article on scanxiety and ways to cope with it. I'm not sure if you have seen it yet, but it might help you in your current situation:

  • It's hard very hard but you will get used to it. Don't forget to live In between scans - do something new or just continue what you are doing. Exercise and meditation helps.

  • Definitely "live" between scans!! This may sound crazy......after my husbands last scan (which was NED) we went to the animal shelter and rescued a sweet little dog. I can't believe how much joy, laughter, love & excersize he has brought us in the short six weeks we've had him. My husband hasn't even thought about next scan (end of June). What a blessing our little Jack has been to both of us!!! We sure go for a lot more walks!! And definitely take one day at a time!!!

  • Oh, Jenni, what a touching time in your life you just shared. Thank you. I agree, our sweet companions can heal, distract, and love. They simply fill in the empty spots without any is just what they do. Jack is part of what is good in this world of ours. Thank you for sharing.

  • Jenni - I am so happy for you and your husband - love your advice of "living" between scans -- I also love that you rescued a sweet little shelter dog - Jack sounds like he's brought extra love and joy into your life! I have two sweet little "Chiweenies" -- (Chihuahua/Dachshund Mix) and I adopted them both as puppies from a Rescue Group back in 2013. They are my little loves and always by my side -- I know they can sense when I'm not feeling well and those days they are such amazing little love bugs! I adore them both and I'm so happy they are part of my life. Bless your hearts and I hope your Hubby does well on his next scan, mine is coming up next week!!

    cmilashoski - As others have already said, "Scanxiety" can be one of the most difficult parts of our cancer Journey. I am a Stage IV NSCLC survivor and have only reached NED one time, and sadly it was only for a brief time. Now, however, I am doing well and have been "Stable" and "Off Treatment" for just over a year, thanks to an excellent response to Immunotherapy (Opdivo). I really don't think about NED so much now and am very happy with every scan that has me stable. My Lung tumor is now very tiny and has not changed in months. When I started this battle in March of 2015 - I was sudden very ill and it all came on in two days, I thought I had Vertigo, but we quickly learned it was a brain tumor and that was a Met from Stage IV Lung Cancer, I also had a Pulmonary Embolism and was hospitalized for the first week due to Neuro issues. I had no symptoms or warning of lung cancer and felt totally fine up until the "vertigo" like symtpoms came on, that was on Wednesday and by Friday I was in hospital and quite ill. I lost my speech and the use of my right arm/hand, due to massive edema from the brain tumor. Thankfully, Dexamethasone (Steroid) and Cyberknife took care of the brian met and I have not had any recurrance. Every MRI has since been clear. I'm come so far in the last 2 1/2 years and know I am extremely lucky to have done this well with Metastatic LC. Yes, I do get stressed a bit when I have scans coming up (for me that's ext week) but I try very hard to "think positive" and in the meantime, I'm truly living my life. I plan to savor every minute. I also have been blessed with a beautiful grand-baby, (my first) a sweet six month baby girl, who I now babysit for 3-4 afternoons each week - She's been a dream come true and back in 2015 I honestly never thought I would have a grand baby. She's my new little love and having her in my life (along with my little rescue pups) gives me more even more hope and inspiration. I'm plan to be here for a long time and want to see this beautiful baby grow up! I would be thrilled to be Stage 2 (even 3), but as long as I have treatment options, I'm not giving up! I have far too much to live for! I still do get Scanxiety, but I'm always hopeful and do my very best a to cherish every day and get out and enjoy LIFE!

    Best wishes to you....

    ~ Lisa

  • God Bless you Lisa! Live, love, laugh and give your new grand baby extra squeezes ❤️ 👶🏻 Prayers for good scan next week!! 🙏🏻

  • Best of luck, Lisa! We will be rooting for you:)

  • I know exactly how you feel. I am in same boat. I got great news that my scan showed no signs of cancer in lungs. I still have to wait until June to see if treatment worked for brain tumor. I'm trying to be happy and live in moment. Some days it works some days it doesn't. But I keep trying. My husband and are taking day trips each week to get away and that helps. I read a lot. My doctor next month wants to talk about putting me on a new medicine called Alecensa. I don't know what to think about it. I wish you the best. Keep prayerful. Enjoy life is what I'm trying to do one day at a time.

  • I can certainly relate to your anxiety. I wish I had a fix. I have been in remission for 3 years and can't shake the fear of return. I lost 2 members of my family from this, and my brother 2 days before I was diagnosed. I will pray for us both!

  • ty my husband died from lung cancer but his doctor never said he was ned so I guess I should consider this a good thing glad to hear your 3years past mine has only been a year since surgery and I still have pain in that area always thinking that the cancers back uggh!!! ty for writing and prays for you too

  • It will be 2 years since my lobectoctomy on June 1. I still have occasional pain in the incision site and where the chest tube was inserted. I don't believe this is unusual considering how many nerves are cut during the procedure. It is quite manageable. Also, your fear of recurrence is normal. I recently had a headache that would not go away. Thanks to an understanding primary doctor, a head c t was done and fortunately showed nothing wrong. My first thought was that my cancer had spread. All of my friends who have had cancer react the same way whenever something out of the ordinary occurs, but we can't let cancer rule our lives. We deserve to live as full and happy lives as possible.

    I hope you find what works for you.


  • cmilashoski,

    I am so happy you joined us in this community. You won't be sorry you came here - these folks are open and kind.

    I am really sorry about what you have lived through with your husband, how painful and sad. You seriously don't need to have any "prescribed" reaction to your NED - and of course, you can only respond with what is in your heart, we live complicated lives with all kinds of possibilities staring us in the face. It is wonderful news, but your anxiety and lack of trust in the outcome is so normal it screams "I am human" in the most profound sense. Allow yourself to feel whatever you are feeling, honor those feelings.

    Once you allow yourself to feel all that is swirling inside of you, you can then look at NED with honest and realistic eyes. NED is lovely.

    Bless you, please know we care. This has been so hard. No two ways about that. But we are here, and right now...well, the news is quite wonderful.

    Walking with you...honestly.

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