Ovarian Cancer Question

I was diagnosed with Ovarian Cancer 1a2. My question, before the TAH my CA 125 count was 825. When I saw the oncologist last week he said he would only have me do 3 rounds of chemo but my count was so high so he wants me to do as many as I can tolerate. He said typically if people have that high of a count they have a much worse cancer than a 1a. I did have diverticulitis (which is how they found the cancer to begin with) which could have elevated my counts to begin with as I had fluid in my abdomin due to the infection in the colon.

I had my CA 125 test again last week and my count is now 11. In your experience do they use that number as a marker to see exactly how many rounds of chemo you will need? Will that number go up for any reason?

Thanks

Kim

Hi Kim,

Boy, this is confusing stuff, isn't it?

I've been told that the ca-125 number is not relative to how much cancer is in your body, but rather how much of the protein marker is in there.

Don't forget, the ca-125 is FAR from being a wonderful diagnostic tool. There are waaay too many false results, both negative and positive.
Many things can cause an increased ca-125, and your diverticulitis very well could have been the culprit in that 825 number especially seeing as it is now 11. Once you start chemo treatment, the ca-125 is used to see how well the chemo is working.

I think you should ask your oncologist to clarify the treatment options he has planned, and if you aren't sure of anything, keep asking til you understand what he's saying.

Question anything that does'nt seem to make sense to you. Ask him to go over the pathology report with you, with stage and grade of your cancer. Unfortunately, we have to be our own best advocate here. It's important for you to know all your options so that you can make informed decisions. It's your body....You are in charge!
Hope this helps!
in there!

Thanks K9 for your response. My surgeon wasn't concerned about the CA 125 level at all (but as my dh says, he's a surgeon, he doesn't deal with the after stuff). What I don't understand is if my count is 11 now it shouldn't get any higher should it? Well, I guess I did read that it could go up a little as the cancer cells die and admit the proteins that get elevated. I think I need to pin him down as to the number of treatments. Thanks!

Blessings

dear mikat...yes, the ca125 level can rise if there is inflammation or infection in the body. my gyn/onc ordered the ca125 prior to every second chemo treatment in my case. it remained stable throughout...i think it was 13. it was 40.1 to begin with. he hasn't ordered any more ca125 tests post chemo so far as in his words "he doesn't find it to be useful", unless there are symptoms of recurrence upon physical exam (pelvic/rectal every 4 months). i disagreed and asked my family dr. to order a ca125 and it is now down to 9. i will continue to pay for the test myself ($35.) just for some "peace of mind", even if it is a false sense of security.

did you get a copy of the operative report and the pathology report so you can see for yourself what was done during surgery and the results? this information might help you to formulate questions relating to the number of treatments that are reasonable in your case.

btw after reading my reports, i found out that i also had diverticulitis. to my knowledge i had no symptoms. do you know if it's something that can be cured by surgery or is it a lifelong condition? what were your symptoms?

good luck with your treatments...hope they aren't too hard on you. let us know how you make out.

Hi Kim - it seems that the CA 125 number is more art than science. My pre-surgery CA 125 was 12 and was at 5 post-op and post-chemo, so it hasn't been a reliable marker for me. I had 4 rounds of chemo that were based more on the type and stage of cancer than the CA 125 number and based on the fact the chemo was intended as more of a 'preventive measure' - all the best to you as you decide a treatment regimen.

Ladies, thanks for the information. Yes, I do have the pathology report. A dr. from our church is going to look it over and he will give his recommendations as well. (He is not a chemo dr., but research is his thing.) Our friend is concerned that oncologists, in general. like to err on the side of too much chemo and I guess I want to be sure I have an educated discussion about this. Basing extra chemo just on my CA 125 numbers seems, perhaps, a little much especially if everything is going okay. But, I'm not sure what "going okay" really means? I guess my question is what are they basing the number of rounds you do in a situation like mine? I guess it is not cut and dried.

On the diverticulitis note, nogreatmischeif, it is something to be concerned about, but something that can be controled largely by diet. I went into the ER April 1st with some stomach pain that wasn't great (I have a high tolerance to pain) but it was continual. I was kind of thinking it was an appendicitus. They did a CT scan and found the divert. and the large ovarian mass. So I praise God for my diverticulitis!

I was put on large masses of antibiotics that made me loopy for about 10 days. This dealt with the infection - I was never in a lot of pain, maybe a 3 on a scale of 1 to 10. At the hospital I was told to stay away from nuts - I had been eating handfuls of almonds the day before the outbreak - as the body (as we get older) doesn't digest these well and they get caught in pockets in our intestines. Bottom line is that I have changed my diet to much more fiber. I also am much more diligent about eating my 5 fruits and vegies everday, both for the diver. and the cancer. I also get a diver. email digest which has been very helpful. If you are interested PM and I can send you the link.