Dear Dr. Goodman,
I had an appointment with you in 1998 when I was first diagnosed with stage III ovarian cancer (CA125 was 1,147 then). I consider myself extremely lucky: it's been almost 13 years and I'm still counting! I was free of disease for almost 10 years until it came back in 2008 - in the form of a cyst on my liver. I had surgery (late 2008) and chemotherapy (spring of 2009) again, both of which were successful.
However, since early 2010 my CA125 has been going up steadily: 15 (feb), 31 (july), 66 (oct), 100 (dec), it is now at 127! My doctor and I are concerned; but she's right in saying that she will not treat a number - until we have some evidence that the disease is back. So I have many questions for you - and I hope you will find the time to answer them (at some point):
1. Is there any possibility that even though my CA125 is going up the cancer is not coming back?
2. I have had 3 CT-scans in the past year (just one recently) which have showed no signs of recurrence: no tumours. My doctor wants to do more CT-scans just to keep an eye on what's happening, but a concern is radiation (I have had 13 CT-scans altogether since 1999) and the possibility of secondary cancer from that. Should I be concerned about that?
3. The hospital here will not do MRI's but there is a possibility that I may pay for an MRI elsewhere - should I do that instead of the CT-scans?
4. Finally: if and when my cancer recurs, will they try the same (taxol+carboplatyn) mix? Are there any new treatments out there to treat recurrence? Can we really begin to think of ovarian cancer as a chronic disease that may be contained - or is that just an illusion?
Thanks again for your wisdom and generosity!
Chasing a CA 125 when there is no other sign of cancer is tricky. There was a study a few years ago that suggested that survival was no different between women who were treated when they became symptomatic from their recurrence versus women who were treated based on an elevated CA 125.
That study only looked at women with first recurrence and I suspect is really only relevant to women who have chemo resistant disease where the cancer returns within a year of diagnosis. For long term survivors, I suspect there are no rules. You have experienced a very different cancer from someone who has a recurrence within a year.
Could it be a chronic disease - yes , for a while. but it may be that there is a shorter remission between treatments.
It may be that if several CT scans do not show anything, and you have no symptoms, you should wait before considering an intervention.
Carbo and taxol or carbo and doxil or carbo and gemzar are three very effective regimens for recurrence.
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