Symptoms of recurrence?

[JulesFrances]

We need some help. I can't seem to get any detailed info from my Gyn/Oncs, or find specific research about the signs of recurrence of Ovarian Cancer. What symptoms should survivors be monitoring when trying to determine whether there is a relapse?   Which blood test can we trust?
My current Gyn/Onc no longer thinks repeated CA125 tests are no longer worthwhile. Is the HE-4 blood test now considered a more valid and reliable marker?
When should a patient with an aggressive form of OvCa (CCC) ask for a new CAT and /or PET scan?  
Getting frustrated when I find quotes about OvCa recurrence on prominent Medical Institution's website, such as    "cancer has a large spectrum of behavior making it relatively difficult to diagnose a relapse and determine the aggressiveness of the tumor."

[jr1971]

The bottom line is that OVCA is hard to diagnose. I too get frustrated as I have an inbuilt expectation that the oncology community ought to know more than they do. The issue really is that they don't know as much as they would like.

One of the key issues is that any symptom that you could attribute to OVCA (recurrence or first diagnosis) could easily be explained by any number of benign and easily treatable conditions. My wife had no symptoms and her cancer was only found when she had a hernia repair operation.... the tumor was causing the hernia in an old cesarean section scar. If doctors gave a list of things to look out for, you would find them most every day and would probably become a nervous wreck.

There are no screening techniques that are reliable - CA125 is around 75% reliable, that is 25% of people will get a result that is too low and cancer/recurrence is missed or too high and they go through invasive procedures that are not required.

From what I have read on HE4, it is a bit more reliable than CA125 at around 85%, but these are quite small studies that I have read. In one study they looked at diagnosis with CA125 and HE4 and found it to be accurate in around 90% of cases. HE4 does (according to one small study) seem to be able to detect recurrence earlier than CA125.

There are screening trials going on in the UK with around 200,000 women looking at Transvaginal Ultrasound (TVU) and CA125. This is a 10 year study. After 5 years the TVU arm of the study was getting better accuracy.

CT and PET/CT seem to be a very useful tool - my wife's tumours don't show up on CT but they are clear to see on PET/CT.

I guess from all of this a good plan would be to have:

Regular HE4 and CA125 in combination with TVU and PET/CT. I know this is a lot and that many insurance companies won't pay for all of them but this is what is available at the moment.

Good luck!

[marie3B]

I understand your frustration.  Seems like it is hit and miss the way ovca is diagnosed and treated.

CA125 is useful for some and worthless for others.  I have been getting CT scans every 3 months.  They don't show all my tumors, but have been useful in finding my recurrences.  I don't know anything about the HE-4 test.  I hope all goes well for you.

Marie