(Some Quotes from Real People about Tumor Markers from My Online Support Group)

 

 “My Tumor markers were always in the normal range and only rose when the treatments began. My oncologist told me that tumors dying off will often times cause a fluctuation in the numbers. He never really wanted to discuss the numbers because he believed them to be nothing but unreliable and scary for the patient.-Susan Andrews”

 

“By the way -- I'm another one whose tumor markers are completely unreliable...the highest they ever got was 68, and that was 4 months into chemo, when the scans showed response.” (member of support group)

 

“ My tumor markers also are unreliable, and have never been elevated. I have scans every two or three months. I have a local oncologist in Maine and a primary one in Boston, which means that two teams of oncologists and radiologists look at everything.” (member of support group)

 

“With CA27.29, the absolute numbers don't matter as much as the relative trend in your results. My markers in absolute numbers are low -- I was 230 when I started chemo in March 2002 with liver mets, and I am generally in the 20s now that there's no detectable cancer in my body. There are other people who have done VERY well on chemo whose numbers are around 1000-2000 now -- but they started at about 13000. And there are other people for whom CA27.29 is unreliable -- their markers don't reflect what's going on in their bodies.”(member of support group)

 

“My tumor markers went up 600 points in one month to 1200. My CT scan showed stability and my bone scan showed improvement! Who knows?”(member of support group)

 

 "I see you have had big fluctuations in you marker so it is understandable why one up or down is not indicative. Mine hasn't had large jumps either way yet. I am a person whose markers don't accurately show what the CT scan shows anyway. I am at 49 on the CA27-29 but still have a massive tumor alive in my liver. The number has dropped from 198 in a year but the tumor has hardly changed. It isn't an accurate indication for me but I just look at its relative movement. We put all our marbles on the CT now." (member of support group)

 

“In fact, I was told to expect my marker to be HIGHER after the HDC since tumor cells were probably being shed from the chemo.” (member of support group)

 

" He (the onc) said not to worry about the elevated CA27/29, that so much is going on at a cellular level that the count isn't necessarily meaningful. Dare I believe him? Dear ___,
yes, you can dare believe your oncologist. The CA27-29 tumor marker test only tracks a trend. It can bounce around a bit. It is only when the numbers consistently go up that the onc will order a cat scan to see if something appears to have changed physically. An onc would never treat you on "numbers" alone from the tumor marker test.” (member of support group)