Topic: Beliefs, Attitudes, and Evidence

ASCO Connection piece.

Beliefs, Attitudes, and Evidence. … dence.aspx

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Beliefs, Attitudes, and Evidence

I'm with Mary (the patient) fully on this.  I've been an engineer for over 40 years - the latest catch phrase is "trust but confirm".  That says it all.  Since so little is known about CC (and probably less about how it would restart), extra testing (within some restraints) makes sense to me.

How many of us change engine oil every three months or 3000 miles?  Realistically, it is fine to run it twice that, especially the synthetics.  Why hesitate about testing?  "If only" I had found CC earlier, I might have been eligible for surgery and might have a better prognosis.  That belief is probably affecting my attitude. 

I'm not advocating CT scans every five years for adults over 50 - there are probably not enough resources to support that, plus the insurance companies would refuse to cover it.  It almost sounds like the position is that after you've had cancer, even if you're in complete remission, the clock is ticking, so testing more frequently than recommended will not appreciably affect the outcome or the timeline.  I hope I'm wrong.

Fighting with dignity, not desperation.  Live, Laugh, Love - One Day at a Time. 
The past has passed.
"Second star to the right and straight on 'til morning."  JM Barrie

Re: Beliefs, Attitudes, and Evidence


While I haven't been part of this group of CC survivors very long (I already consider myself a survivor, though it's not been long since my surgery),  I have already thought about frequent testing of some kind....even if it were a simple, abdominal ultrasound of the liver to look for any new growths (assuming they would show up).  I'm concerned about having so many CT scans because of the cumulative radiation, but in the grand scheme of things and life with CC, I can see the need.  I probably am going to push for an MRI inbetween CT scans, just for my own sanity, depending on how anxious I begin to feel.  My blood tests never showed anything abnormal, right up to surgery Feb 28th, so it's doubtful that blood tests will be any indicator of a returned disease state in my case.  Even the CA 19-9 was smack in the middle of normal.  My only symptom was a sudden drop in blood sugar (43) that I later found out was a sign of liver cancer.  However, that didn't happen until a week before the 4.3 cm tumor was found.  I weigh the anxiety I already felt before my 6 week post op scan, worrying about whether the scan would show a new tumor., with the relief that came after the scan in finding no new tumors.  I think I could live with CT scans every 3 months, which would give a length of time when I might be able to have some less anxiety prone time, not that CC will probably ever let me be free of anxiety. 
I know that I"ll never be free from worry about this cancer, but knowing how aggressive it can be is enough to convince me that being ultra watchful for recurrence may be a good idea.  It certainly has "my" attention with a return rate for ICC of upwards of 80%.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.