Frustrated with the way Onco's test

Deamo1

I'm frustrated as hell actually. So an Onco tests cancer antigen, lab work and uses scans. I'm finding out that cancer antigen tests are notoriously unreliable, blood work can all be normal yet you can have progression. Scans seem to be the only thing that is 100% true. I have not had a scan in 6 months yet my Onco takes labs and antigen every 4 weeks-- why? It causes false hope for me. Are they just guessing here?

exbrnxgrl

hi deamo,

Depending on one's condition it seems that mo's take different approaches with testing/monitoring. I have been stage IV for 10 years and have never had tumor markers measured and only get annual blood work and an annual PET. However, my mo is quick to order scans if I have any pain or complaints and my self contained HMO never requires approval if my mo orders it. Now, back to scans. Initially I had scans every 3 months, then slowly moved to every four months, six months and now yearly. I admit to being a bit nervous every time we lengthened the intervals but… I've cut down on a lot of radiation exposure, don't miss the scanxiety and am confident that if I have symptoms, my mo will deal with them swiftly. But there are mo's who do scan more frequently even for long termers like myself. Had I continued on an every 3 month scan cycle I would have had over a dozen PET scans by now. The other thing to bear in mind is that you can have a new met popping up somewhere and it will have to do a bit of growing before imaging can pick it up, so scans do almost nothing in terms of detection until the met is large enough to be detected! Yes, it stinks but it's where the science is currently at. Wouldn't a highly reliable liquid biopsy be wonderful?

Deamo1

You make the most sense I've heard yet. Thank you. I am seeing on other forums that their Doc takes scans every 3 months. Now I understand. Again, thank you.

candy-678

Deamo- Where is your mets? What meds are you on?

The reason I ask is each person is different. When we found my liver met it was 8cm, the size of a baseball. No symptoms. Ate well. No nausea. No weight loss. Labs looked good (liver enzymes). I was put on Ibrance and Letrozole. It is now 3 1/2 years later. I have gotten scans every 3-4 months the whole time--CT's and MRI's--only 2 PET's total, and 2 bone scans total. Lately I have had some small increases in the size of the liver mets. We are closely monitoring that. I have labs every month--- CBC to monitor white count on the Ibrance (mine have been very low the whole time), liver enzymes to monitor liver function thru the blood, and tumor markers. Once, before these small increases, my MO mentioned moving scans out to 4-5 months, but never said longer than that. Now, with the changes, that is off the table.

So it is really individually based.

Deamo1

Mets to the spine only. I'm on Faslodex and Zometa only. I'm very allergic to the CDK drugs so they took me off of them. I know it's risky though.

candy-678

Deamo- I have a "real" friend, lives in my hometown and goes to my church. She is bone only. Stable for 9 years. She is on Arimidex and Xgeva. She gets labs every 3 months, when she gets her Xgeva (to monitor calcium level). And scans - CT and bone scan- every 6 months. She is not on any meds to mess with her white counts (CDK's) and she does not have organ involvement.

So everyone's case is different.

I would speak to your MO about what you want done. What your health is like otherwise, other health issues. Your financial situation for diagnostic/screening testing. And what you feel you want in monitoring. Some want less monitoring-- scanxiety, but some want monitored more frequently. I like watching things more closely because I was spooked that I was growing a baseball in my liver and didn't know it. Also, insurance calls the shots as far as scanning. If a person is stable they might not want to do scanning more frequently. I wanted a PET after 1 year of treatment. My insurance denied since the 3 month CT's were stable (at that time).

Deamo1

Thank you so much. Appreciate it.

Anonymous

Bone only mets - scans every six months since I became stable/NED. Actually did them every eight-Ish months since Covid hit last March.

Tumor marker tests not accurate for me yet they continue taking them about every six weeks or so.

The other bloodwork is useful not just for monitoring the cancer but for any reactions to treatment etc.

I also get echocardiograms every 3 to six months because I’m on Herceptin.

Since I’ve been stable for awhile, I am very much in favor of less frequent scanning. I don’t want my life interrupted every 12 weeks with the anxiety, the day long trip to the imaging center and the radioactive material going into my veins

Deamo1

I hear ya. There are woman getting PET every 3 months. Thank you