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What does the future look like for a stage 4 NET patient?
This is my story....A lobectomy of upper right lobe of the lung in 2016 It returned in 2023 with a tumor in a lymph node behind my heart. Followed by radiation and chemo. In 2025 I was diagnosed with stage 4 NET's. New locations are in the bone, (12th rib, hips) liver and the now smaller tumor behind my heart. These are small lesions and tumors/spots. I feel great, exercise often in good shape but I'm wondering what others have experienced and what I might do to better my future outcome, what I can expect in the future? Just any advice or thoughts would be very helpful. Thank You!
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To michellehcapouch....My Bone NETS showed up from the Dototate scan. The rib does hurt at times but seems to come and go. Lower back pain is there as well perhaps from the spots on my hips but its manageable. I make sure that I stay active and it definitely has a positive affect!
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2 ReactionsMissterri,
I had those symptoms as well, the lobectomy really helped and the chemo and proton rad worked as well to relieve them. I know for me that staying active with physical training has been my life saver. Its hands down the best medicine in addition what they do for me at Mayo. The two together are powerful. I'm seeing an integrative medicine oncologist doc to dial in the exercise/intensity with nutrition with sleep/stress with my condition and medicine. Personally I feel this is really important for us all. The Sandostatin/Octreotide that I take every month seems to be a positive as well.
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3 Reactions@jameshoch
Thank you for the information. I unfortunately have POTS and have dealt with a post-viral illness that causes post-exetional malaise. I have to be very careful not to outpace my energy envelope during activity, or I will crash. I do hope one day to be back to my former abilities!
@jameshoch
Hi James,
I'm from the 'feel the burn' era, and I have adjusted my thinking now.
Many factors could intervene when considering exercise. Covid (long haul), My doctor had Covid and died when it went to his brain. Asst. other conditions, so now I maintain a healthy lifestyle of food considerations and regular but more moderate exercise. But again, we are zebras (all different) with NETs. I am consulting the professionals with this.
Stay active and healthy as you can- makes a difference!
Have had stage 4 NETs since April 2015! Started in GI system - resection surgery in 2015 (2) and 2020. Moved into my liver in 2023 - liver surgery in 2024 ( removed 45 tumors) -liver ablation in Jan 2025.
Have had PRRT , landreotride shots - all in effort to slow growth - still have lesions in liver, bones ( femur and hip) - but feel lucky to be nearly 11 years of fighting.
Work out daily , ski, swim work - trying to be thankful for all I have
Stay after it! Dr Thor and team ( and amazing Mayo surgeons) have been w me every step.
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4 Reactions@jameshoch Thanks for sharing. I was not familiar with integrative medicine oncologist. How have they helped you with your sleep?
Hello @post17 and welcome to Mayo Clinic Connect. From your post, I see you have been on a long journey with NETs since 2015 and have undergone many different treatments. I'm glad to see that you are connected with some great NET specialists at Mayo Clinic.
It sounds like you maintain an active lifestyle, which is wonderful. Your journey with NETs is an encouragement to all of us. We have other members with a similar story to yours, including @tomrennie.
How are you feeling? Do you have a good appetite and maintain your weight?