Frustrated....How do we know if the cancer is NED/remission

I was diagnosed in 2006-almost 9 years ago!  The only scans I had were prior to treatment beginning.  My oncologists (MO, RO) say no scans unless symptomatic.  At first I was uneasy with that but now I am ok with not having them.  When I asked how we know the cancer is gone I was told..."When you live to be 80 something and die of something else." 

Also, transitioning back to life after treatment was hard for me.  In many ways it was harder than being in active treatment...Not harder physically, but harder psychologically dealing with the fear and the what ifs.  I didn't think I needed it but I finally talked to a counselor where I was being treated.  BEST thing I have ever done.  In just a few sessions I was able to reframe what had happened to me during the prior year.  I wish that I had gone sooner.

I just passed the magical 5 year mark since dx. I prefer the 5 years past end of treatment which will be May next year for me. I almost feel like laughing if someone says "you're past 5 years, you must be cured".  I know they mean well, but five years just means the chances of it coming back have diminished somewhat or maybe it is a just a lazy slow moving cancer after being beaten by the chemo stick.

My onc does bloodwork every six months which includes a tumor marker test.  I have no idea if it accurate for me, but if it climbs steadily up then we'll know a scan may be in order.  I suspect I'll be seeing her for the rest of my life. I do think that catching a recurrence early could be beneficial for longer survival. 

I'm stage IIIC so every year in remission is a huge bonus for me! 

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After years of studying this topic this is what  helped me come to terms with not undergoing routine tests without any symptoms.  

Studies continue to show no difference in survival rates.  I understand that there are two major reasons that this could be.  We assume that the mets cells will act and respond the same as the original tumour.  Apparently, this is not the case.  Secondly, although the hope is that chemo will kill ALL cancer cells, this does not usually happen.  Cells can be left behind, mutating or becoming dormant.  If chemo is a big gun that is used before any symptoms, (usually indicating detection when cells are still small) it could serve to cause any remaining cells to become more aggressive and resistant to future tx when it does start creating symptoms.  

Of course, not all cells respond the same in every person or organ.  That is one of the reasons that this disease is not yet considered "curable".  If a cell is already very aggressive, not much will be able to stop it.   My doctors' tell me to let them know whenever I experience anything new in my body.  I have done so and have been given the appropriate tests immediately.  So far, test results have shown that any symptoms are non cancer related.  

I am not anti testing.  I just believe that having routine tests will not enhance MY life.  Scanxiety wastes prescious time.  Losing two friends shortly after they received clear results from routine testing has also convinced me that there is questionable benefit to it. 

Some people will have different views and reasons for them.  Cancer is not black and white, either/or.  Do your own research and decide what helps you live life for you in a way that does not let cancer dictate more of your time than it should.  

At dinner tonight we were talking about Dr David Servan-Shrieber.  You can google him if you are unfamiliar with him but he was a pioneer in anti cancer diet and lifestyle.  He is a prime example of the pitfalls of routine scanning. Within weeks of a clear scan he began developing symptoms. He didn't follow through on them because he had been given a clean bill of health.  When he finally went to the doctor, the tumour was quite large.