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Avatar universal

Question about slightly elevated AFP levels

Doctor,

I have a history of germcell cancer.  At 23 I was diagnosed with an 11 pound tumor in my chest wall that was treated with chemotherapy and then removed via surgery.

I had 2 re-occurrences (small) before my last one.

Recently I had a complete vertebral body removed that contained a germ cell tumor inside of it.   This past surgery was 7 years after my last one.

Because my doctors said it was a "slow growing" type of teratoma ( my first grew so long it developed malignancies inside of it but didn't shrink with chemo, just stopped growing) and does not respond to chemotherapy I had none and am proceeding with regular checkups.

At my recent appointment, four months after surgery I had a CT scan of my chest (all tumors have been in my chest region) and it is clean.

However my AFP level was 11 and normal is 5.

My doctor is concerned but it is down from the level just prior to surgery of 15.

If my scans are clean should I be concerned with a slightly elevated AFP level as long as it doesn't go up?   I will inform you that between occurrences s its been "normal" and slightly elevated and to me doesn't really seem to fluctuate based on what an actual tumor has been doing.   In 2008 it was normal but the tumor was growing inside my vertabrae and was just barely visible as a nob on the CT but wasn't large enough to be a concern.

My basic question is without a tumor on my scan should I be that concerned about AFP levels?   I know they remained slightly elevated post surgery in the past but again if they are so low can they really be indications of slow tumor growth if there's nothing you can see on a CT?

Thank you
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Avatar universal
at 14.  Doctor is concerned so I am getting CT Pet tomorrow and an MRI on Wednesday.

Called my neurosurgeon and the nurse said my hardware is Titanium so I'm good to go on MRI.

I almost wish they'd find something small so I could get this over with.  I'm worried that they won't find anything and I'll just be left to wonder.

Reality is there is nothing to do until they find something on a scan.  Even if there is something in me it's so tiny now that it won't do any damage if it doesn't show up on a CT, CT Pet or MRI.

Oh well.
Helpful - 0
Avatar universal
I'm glad to hear your in good hands.

I wish i knew more about this but I know there are people at the other site that can give you the information you need.  

Our thoughts are with you on that 2nd AFP.
Helpful - 0
Avatar universal
I know Dr. Einhorn very well.  He was involved in all four of my previous treatments.

My doctor will probably contact him after my 2nd AFP test comes in.

I was just hoping to get some more info to ease my mind.
Helpful - 0
Avatar universal
Just wondering,  Have you been treated at Indiana University Hospital?
Dr. Lawrence Einhorn is the best and will give you his opinion via e-mail.  I would include his info but it may get edited.  Just google his name hes at IU.
All the best.
Helpful - 0
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