[StephN]

Lots of good input here - I think there is still an interest in this thread.

I want to add that tumor marker CA27-29 was drawn in my case as I began adjuvent chemo in a clinical trial. It was not my doing to get them in the first place.
Whether I got the markers or not had NOTHING to do with any national guidelines. That labwork was part of the trial criteria.

My next chemo was also part of a trial and again the markers were included. The explanation I recall from that time is that these trials were for high risk patients and therefore the markers were included. I am going back to 2000/2001.

While on Taxotere (second trial) my marker shot up to over 60 and I was scared out of my mind. My onc said not to worry that this happens all the time and does not mean that disease is getting worse.

Because of that high reading, my onc wanted to keep checking my marker frequently to make sure that it would go down. The number did go down to nearly normal near the end of my radiation. Then into normal range by 3 months after completing the chemos. My onc wanted to watch that number and see if it would stabilize.

Well, the number did not stabilize, as the next 3-month check showed it up to 57. At that point my raging liver mets were confirmed. I had a PET scan a few months earlier as that was also part of a trial - it was negative, so those mets got going after my radiation.

I hope this sheds some light on why some of us have been followed with markers once they were shown to be indicative of our disease path.

Since I am stage IV, the markers have become part of the routine. I do not obssess over finding out my numbers each time. I know that someone will let me know if there is any change. The Ca 27-29 number is stable between 17 and 24 for over five years now. The CEA rose an fell with my brain mets. The now very low reading gives me peace of mind and my scans are not a worry.

One more thought regarding scans. Having had dozens of brain MRIs in the last 3 years, I am becoming impervious to those as well. I had a nice chat with my rad onc yesterday who said that my results have been good and he thinks I can move from 3 to 4 month interval between scans now. He thought that I would be really happy to have that extra month without the scan anxiety. I answered that by now I am not giving in to "inscanity" just giving it over to the Universe and what will be will be. He looked a bit surprised, but said that is a way to have confidence in my body again. My reply was to agree that I feel "out of the woods" even though I know things could change.

What I say here is my personal experience, and we will all go through a time of getting to know our NEW selves (after bc) before we can get to a place of feeling comfortable with our followup plans.

Being on "permanant followup" I just have had to accept that and not worry about the cost to my insurance provider of keeping me alive. I went through my million dollar lifetime cap last summer. But now have a med-advantage program. I can't help how much my treatments and surgeries cost as there IS an expensive drug that works for me. There has NEVER been a question of Quality of Life for me. LIFE was the goal and the quality would (and has) follow if I was allowed to live.

P.S. Thanks to Kelly below in reminding us about not having caffeine prior to the markers being drawn. I have been off caffeine since becoming stage IV. Meaning I rarely drink coffee and use herbal teas and NO Coke or Pepsi.