Ovarian Cancer

[ilisten]

I was diagnosed w/ OC 3a, epithilial in Oct 06, chemo until mid Feb 07 (carboplatin and taxotere) in a port, CA125 originally 91, after optimal debulking 115 just prior to first chemo Nov 3rd. CA125 dropped to 67 after first round, continued to drop well to 8 at end of Tx.
I get lab work (blood tests) every 2 months, CT and Xray every 4 months.
6 month ago my CA125 went up to 9,
4 months ago to 10.3
2 months ago to 11
a week ago it was 15.
I am really getting scared by the climb. My oncologist says "It is ZERO!!"
Ct and Xray remain clear.
No experience to draw on here and no clinical data. How do I get the doctor to answer this fear and do any of my "Chosen Sisters" out there have knowledge to share?
Thanks so much.
Peg

[luty]

Hi!
I just discovered this forum. I know it's been a long time since you posted, but I did want to let you know my experience and some experiences I've learned about in previous support groups. CA125 isn't perfect. I would be nervous that mine was rising, too, but yous (when you posted) was well within the normal range. My advice would be to keep on top of it or, if your still worried about what your doc says, talk, talk, TALK to him/her about your concern. Maybe a vaginal ultrasound??? I know that in my situation (diagnosed stage 3c in 2000), my doc says that a CT scan is the only way to be sure about whether the cancer is growing, shrinking or staying the same. (I'm in my second recurrence.)
I hope you know more by now and are feeling more at ease about your condition!!
Lu

[ilisten]

HI Luty,
Thank you for replying to my concern.
Actually I never got any clear info on this topic. Maybe there is none.
What I have done in the mean time is write to TEAM INSPIRE ( Ovarian Cancer division) and gotten a lot of support there from women with many of the same worries. If you do not know that site, go there too.
I have also decided to stop listening to all the voices of the committee in my head and live life. My CT and Xray are clear so far. I feel great and am exercising and eating right. I work full time and run a GYN cancer support group once a month in Jupiter, Fl. I really am healthy right now. Many of us deal with that haunting fear of recurrence, and it can take over your life. It did mine for a while and I was anxiety ridden and depressed.
I've gotten recentered, with the help of women like you who are brave, courageous, awesome, caring women.
A friend of mine wrote to me and said this also (about the CA125 numbers) " Bayesian statistics looks at it this way; if I asked you the probability that it would snow in Miami today, what would you say? Probably you would say the chance is zero. But if I told you it snowed 2 hours ago in Miami, what would you say? Would your probabilty number go up ever so slightly? Now let's say I tell you it is 85 degrees, sunny and a cloudless sky today. Now what does it do to your probability guess?" So, if we look at one number that is doing something, and then look at all the other criteria, we decide that making a prediction based on a number is not so valid a means of prediciting probability.
Then he told me that he and Bayes were not going to let a number predict anything negative for me.
I liked that way of thinking.
Best of luck, love and prayers to you in your courageous journey Luty.
Thank you again for writing, chosen sister.
iListen