Mucinous ovarian tumors - blood markers

[Bargood]

My daughter had a 14 centimeter stage 1 mutinous ovarian tumor removed last year at the age of 24. She has been getting quarterly CA-125, CA19-9 and CEA tests. I recently read that the best group of blood marker follow-up tests are the CA-125 plus apoa-1, TTR and TF. Can you clarify what combination of tests presents the best follow-up for recurrence of this type of tumor?

Concerned Mom

[Bargood]

Dear Jr1971:

Thank you for your thoughtful and complete answer. I will look into the TVU tests for more information and attempt not to drive myself too crazy over this.

Kind regards,

[jr1971]

Hi there

My wife has a Mucinous ovarian tumor and like others on these boards, CA125 is not a good marker for her. Her levels of CA125 have never gone above 25...

Because Mucinous tumors are in many ways similar to bowel tumors, CEA is a good marker for some. Unfortunately, unless your daughter has previously had elevated CEA markers, you won't know if it is a good marker for her or not.

This is also true for all the other markers, none of them are very accurate or reliabel at detecting Mucinous tumors in a reliable manner. This is true for all Ovarian Tumor types but especially Mucinous.

Here in the UK, there has been a long term trial in progress (search for UKCTOCS to get the full details) to see if there is a reliable way of screening for Ovarian Cancer. This trial has recently reported it's first 5 years of results. This is an interim report as the trial is meant to go on for 10 years. What they looked at was comparing CA125 testing with TVU. (In the CA125 group, if the annual test showed elevated CA125, they would then perform a TVU to help further diagnosis, and in the TVU group, it was the other way around, if the TVU was abnormal, they would then do a CA125 test - the control group had no tests at all) It was clear that in the CA125 group, there was a higher number of false positives (people with elevated CA125 but no disease discovered during surgery) than in the group that had regular TVU. The TVU group also had a better detection rate (fewer false negatives) than the CA125 only group. This trial involves 100,000 women and found 58 cancers, but missed 12 overall.

In your daughter's position, I would probably (based on these results) want to have both CA125 (and any other possibly helpful test such as the ones you listed) and TVU, 3 monthly for the first year, then 6 monthly and falling back to yearly after 3-4 years. If there was any possible concern with either the CA125 or TVU, I would want to have a PET/CT scan to get as detailed a picture as possible. I would not rely upon any blood test on their own especially with Mucinous so with a combination of blood tests and scans she would have the best possible coverage. It might be worth adding to this, a 6 monthly CT in the first couple of years to be completely certain.

I guess what I have written is not going to be covered by all insurance companies, but I would get as much of it as I could.

The great news for your daughter is that the recurrence and survival rates for Stage 1 Mucinous disease are very good. This should be a prime focus, or else scanning and testing could take over your life.

Best of luck!