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Now I am MAD and UPSET>>>>> Now I am MAD and UPSET>>>>>

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Unread 08-04-2003, 02:42 PM
Now I am MAD and UPSET>>>>>

All is good, all is well, but that lousy ca125 number will not go down to where it was when I finished chemo last September.

For all of you that know the situation, I got the results of my ca125 number today, from my lab work and oncologist visit last Thursday. The number is now 23 which is one point higher than the lowest last month (we tested 3 times last month).

When I finished chemo last September my baseline number was 12 and each time it was checked it hovered around that number. It even went down to 9 in December!! In June it went up to 34 and then the last 3 times it did come down but into the low 20's.

Yes, yes, I know all the answers, it is still in the normal range, my oncologist/gynocologists exam in June, was totally normal, my oncologists exam in June and then again in July was totally normal, and my abdominal and pelvic cat scan, in June, was totally normal. Well then why is the number hovering in the 20's????? All everyone keeps telling me is that the number can flutuate... But why????/

When I was having the chemo, was the number low because of the chemo?? Could my real body number really be in the 20's???

All I do know is that my oncologist tells me NOT to worry because she is not worried at all. I do absolutely trust her opinions.

I so wanted to go on my cruise with a low single digit number. Now I must go with a hovering 20 something number!!!

Well, thanks for listening... guess that this was my turn to vent and let off some steam BUT if anyone has any ideas, please let me know.


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Unread 08-04-2003, 03:15 PM
Check Out Test Manufacturer

Hi, Rosalie--

I'm glad your CA-125 is normal. Sorry your number didn't come down any more and is not as low as you'd like it to be. I was not happy either when mine went from 8 to 14 a couple of years ago. Do you know whether the lab recently switched from one CA-125 manufacturer to another? I've read that results can differ not only where they switch from CA-125 to CA-125(II), but if you switch from one reagent to another. My "14" results were from a CA-125 manufactured by Abbott Labs. My earlier test did not list Abbott, and did not have the "II" after CA-125.

I've also read that some of the newer tests have a higher degree of sensitivity for the CA-125 antigen and thus I would suspect could give slightly higher readings. You might want to give the pathologist at the lab a call to see if he/she knows if they've changed to a different CA-125 test recently.

When does your gyn-onc plan on checking your CA-125 again?

Good luck and have a wonderful time on your cruise!!

Unread 08-04-2003, 04:42 PM
Now I am MAD and UPSET>>>>>

Hi Moe,

The last time my number rose I did ask about this ca125II and my oncologist does not even know what it is and it did not say it on the result sheet.

However, I am going to call the hospital tomorrow and ask what lab they use and for their number. May be time to do some investigating myself. I do know however that the lab is the same, no change there.

My oncologist does not want to see me until the end of September (8 weeks) because she is unconcerned. Her reaction was also that we need not overkill the number game when all is fine.

Did you flip out when your number almost doubled and did it ever go back to what it was???

Thanks for the information.
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Unread 08-04-2003, 05:07 PM
Cruise Away

It's where you're going to be and it's in the good range so relax and just cruise away. Mine would hit its lowest during chemo and snake up a bit. I know you wanted lower--but this is just fine and the CT and your doctors aren't concerned. I know you'll still be concerned--but relax--that CA125 and everything else is very normal. Shullet sends a (hug)
Unread 08-04-2003, 06:01 PM
I Was Not Happy At All


After the first "14" I had a second a few months later which was also "14." I was troubled by this number after having always had single digit results. Neither my gyn-onc nor my radiation-oncologist was troubled at all by the increase from 8 to 14.

If CA-125 is not a great marker for ovarian cancer, it is even less accurate for endometrial cancer. After two years, my gyn-onc stopped having me get the test to detect for recurrences, so I have no idea if it remained at 14, went down, or increased further. It's now been two years since my last CA-125.

Incidentally, I have a friend who had a CA-125 done (her first and only) when she was being tested due to ovarian cysts. Her number was 24, and the gyn-onc she saw was not concerned at all.

For your own peace of mind, if I were you, I would contact the pathologist to see if there's been a recent change in the CA-125 test manufacturer. I've also read where a thorough report should include the test manufacturer when reporting results. You might want to ask the pathologist what his/her take is on the fluctuation in results; it can't hurt to get another take on the issue. I know the pathologist at my hospital was very informative and helpful when I called him with questions on my surgical pathology report.

Good luck and take care.

Unread 08-04-2003, 07:38 PM
Now I am MAD and UPSET>>>>>


I'm with Margaret on this one.

Your CA 125 is still low. I understand how much we rely on the marker numbers. But if your CT is neg, exam is neg, and oncologist is not worried, I say wait the 8 weeks for the next test. In the meantime, enjoy your cruise !! You certainly deserve to have a relaxing vacation.

Ruth S
Unread 08-05-2003, 06:50 AM
Now I am MAD and UPSET>>>>>

Moe, Ruth, and Ellen.....OK OK yes, I get the hint!! Stop pouting and feeling sorry for myself. I do know, in my heart, that each of you is totally correct.

Moe, I did call the hospital this morning and the response from the hemotology lab was, "They draw the blood and then send it out for ca125 testing. If there was any change in procedure or test mfg. they, and the doctors would have definately been informed. Being that they were not informed of any changes, then everything is the same".

Anyway, I am better today than yesterday and am going to console myself to the fact that as long as my number stays where it is now..that is good.

Have a great day!!
Unread 08-05-2003, 12:26 PM
Now I am MAD and UPSET>>>>>


I can only add what others are - listen to your trusted oncologist, and do not worry. I know that you wanted a lower number, but it is still well within the range. I think that you had a good question when you wondered if you had the low number of 12 because of just finishing chemo. I would ask the gyn about this. But, whatever, you are NORMAL! And, that is good news.

big to you.
Unread 08-05-2003, 12:41 PM
Now I am MAD and UPSET>>>>>

s Rosalie

Sit tight dear friend. Perhaps it truly is your norm. At any rate, I am thankful it is not rising.
I am on vacation, just here checking on you sweet friend. If I miss you before you leave for your crusie, have a great trip.

Unread 08-05-2003, 07:48 PM
Now I am MAD and UPSET>>>>>


I'm so sorry that you're having to deal with all this fluctuation of the numbers. The good news is, your doctor isn't worried! And that should give you a lot of peace of mind. I guess the question to ask her is, "When will you be worried?"

One of my surgeons recently remarked that my CA125 is probably much lower than hers right now. So maybe CA125 numbers are always lower during chemo. I don't know. The company that my HMO uses for CA125 tests cannot measure anything less than 6.3. So the lowest number you can get is "<6.3," or "slightly less than 6.3." I haven't asked the doctor whether post-chemo numbers go up and then settle somewhere else. I know that Jochan's number has stayed consistently low, but she really works at diet and takes a lot of herbs.

I hope you are able to go on your cruise and have a great time! I know it will be hard not to think about all this, but try to have fun and let your mind be free of worry! (I know -- easier said than done.)

My thoughts and prayers are always with you! s!

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