I'm bumping this thread back up to the top. KNOW there are many people out there who are stage IV survivors (many in NEDville). They just do not check in as often. If you do a search, you will find other threads asking the same question.
Know that it is possible to beat this cancer and MANY stage IV people have.
Exercise is a great start (by some reports by 50%). So if you are not exercising now, find something you enjoy and stick with it.
Some advice I can give you is honestly, take what doctors say with a grain of salt. For your doctors to say there is no "formula" of estimating your chances is just total BS in my opinion.
I read all the stats and know about stage IV survival but I really think we can give ourselves an edge if we work hard to take care of ourselves. Your life is too important to just leave your fate up to the doctors and hope for the best. That means lifestyle changes and making adjustments in your life to give yourself the best chance of getting through this.
I don't know what would have happened to me if I kept doing the same stuff (post surgery) as I did (before surgery) but all I know is I made drastic changes in my life such as diet and exercise and it seems to have helped so far. I can't prove it scientifically unfortunately but maybe it's why I'm NED today after a Stage IV diagnosis three years ago.
Tough love but please don't listen to doctors when they say there's nothing you can do to decrease your chances of recurrence or overall survival. They are basically full of sh!t to be quite frank and they refuse to believe anything that can not be scientifically proven in a million studies over a million years.
3. My onc does in fact use a formula for estimating the odds of recurrence. It involves genetic factors, surgical outcomes, life style choices, etc. Have you had genetic testing done on your tumor?
Congratulations on becoming a new citizen of Nedville! I was just as scared as you when I finished treatment. It's part of the recovery process to have panic attacks about "what if's." But don't let that stop you from living life to the fullest. You're alive. You're breathing. You're getting stronger every day. The best way I found to move forward is to build new experiences one day at a time. I haven't lost the fear and dread of a recurrence yet, but it has softened some. When it roars back, I confront it until it's been put back in its place in the background. Sometimes, it's one step forward and two back. But, then all of sudden there are 10 steps forward without even noticing it. Go forward. You are not where you've been, you are not yet where you are going, but you are on your way.
I am one of the newer HAI pump patients. I had 10+ tumor in my liver so it took 4 surgeries including primary removal and pump placement until I finally take me to NEDville. So far so good. No recurrence at 21 months after my last surgery in May 2016.
Looking at your signature you didn't have mets in lymph node which makes recurrence less probable according to the calculator. You have 5 good prognostic factors in your signature alone
1. No nodes = good
2. CEA fall to normal values=good
3. your combination of mutation =good
4. clear margin =good
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