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NED still


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My last CT scan came back clean again! This marks exactly 4 years since my RLL VATs! The spot on my abdomen I was a bit concerned about was begnin and a full body check has me clear of any suspicious lesions (had a basil cell lesion removed 2 years ago).  Finally, my unintentional weight loss stabilized...right at my normal pre-cancer weight!

With some honest reflection I realize I currently feel the best I have felt since this whole thing began. 

Time to seriously contemplate living a long time. I haven't allowed myself that luxary since the original prognosis. If I look at the statistics for one flavor of tumor (Carcinoid which mine was) I look golden (less than 5% chance of recurrence). But if you look at a NET Large cell NSCLC (which mine also was) the odds of recurrence  much higher (80% with minimal data).

I shall now use the optimistic (and more likely) scenario to inform my future decisions.

Very interesting mental position for me. I will live a lot longer than I expected I would. When I told my wife I had changed my outlook and thought I might be around awhile all she said was "I knew that long ago". Time for me to decide what the heck I'm going to do with all this potential "bonus" time! A delimma I hope to enjoy fixing!


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That is great news Tom…yes we have to look more towards the future and what to do with our time….enjoy!


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Wonderful news. I know how you feel. For a while I was thinking that whatever happens, at least I don’t have to be frugal, as I am unlikely to live to a ripe old age. Odds of that are still low (esp given my treatment induced comorbidities), but not beyond the pale, so now I can’t just blow my pension fund as I had planned 😜😜. But in all seriousness, each NED I see posted makes me jump for joy!

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Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

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