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ca125 after surgery ca125 after surgery

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  #1  
Unread 01-19-2004, 07:11 AM
ca125 after surgery

Hello
I have received conflicting info from different doctors. I have also read conflicting info.

What is the number you worry about for recurrence regarding CA125, for those of you that this number seems to be a good indicator?

One doctor says under 35, but then I have seen a study from MD Anderson that says under 20 post surgery.

Any input? What does your gyn oncologist say?

Thanks ahead of time.
coffeebean
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  #2  
Unread 01-19-2004, 07:20 AM
ca125 after surgery

Hi Coffeebean,,,

That lousy ca125 number that runs our lives. Right after surgery, but before chemo treatments, my number was 454. After my first treatment it went down to 42 and now hovers between the 10 and 20 range. This number can fluctuate, within the normal range for any number of reasons and NOT because the cancer is back.

I have been told by EVERYONE, including ALL my doctors that 35 is the normal number and that anything under 20 is excellent. However, "normal" can be different for each person.

Keep in touch.

Rosalie
  #3  
Unread 01-19-2004, 07:28 AM
thanks

Before surgery mine was 740.

I'm 2 years, four months post debulking. I get my CA every three months. It was 9 after surgery, but has climbed to 27. The last year has seen the big climb, from 12 to 27. I'm getting very nervous.
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  #4  
Unread 01-19-2004, 07:32 AM
ca125 after surgery

s coffeebean

I believe it is time for further testing.
More so than a particular number, it is the upward trend that is closely watched.
Has your doctor mentioned a CAT scan or a PET scan?
Please stay in touch.

karenann
  #5  
Unread 01-19-2004, 07:44 AM
further testing

I received ct scans every six months. I moved and thus had to switch gyn oncs. My new gyn onc, doesn't think that ct's are very useful.

He did however do a ct scan on me at my recent appt., this month. He said they couldn't see anything. But- they could only get one sweep on the ct, because I had an allergic reaction to the iodine ( my second and this time I took steroids to prevent it!)

I'm very uncomfortable with my gyn onc now. If I ask him a question - he becomes defensive. He said, by the time a tumor shows up on a ct it has to be huge. He told me to "quit worrying about it." How am I supposed to do that? I asked him about the rising trend in my ca and he just frowned at me.


I have contacted MDAnderson and will be traveling there in Mar. I'm very worried.
  #6  
Unread 01-19-2004, 07:50 AM
ca125 after surgery

Hi again Coffeebean,

In April I will be years past surgery. At the end of my chemo treatments my baseline number was 11. It has gone up and it has gone down over the years.

One time it jumped from 12 to 34 and I went into a state of panic. My oncologist did an abdominal cat scan and all was perfect. Next two times it was down into the 20's.

I do know how scary this number jump can be but I have also learned to listen to my oncologist and if she is not concerned, I try very hard not to be also.

Just to give you an idea....Last Feb my number was 12, In June it went to 34 (that was when I had the cat scan done) two rechecks in June it went down to 25 and then 22. In July it was 23, then in October it was 9 and my last one I had done was the beginning of Jan and it was 20.

Who knows why that number changes. My guess is that the "9" was out of wack and that my true number is in the low 20's.

E mail me if you would like to compare numbers.
Rosalie
  #7  
Unread 01-19-2004, 07:58 AM
ca125 after surgery

Rosalie has had a ca 125 jump all over the place, for sure!!!

But if your ca 125 has trended upward for at least three checks, it deserves more looking into. MD Anderson is an excellent place.

Here is a link to the Johns Hopkins site where recurrences and ca 125's are discussed. Hope you find it helpful.
Like many areas of ovarian cancer, there are no clear cut answers to our questions.

http://ovariancancer.jhmi.edu/recurrentqa.cfm

oxoxox karenann
  #8  
Unread 01-20-2004, 11:46 AM
ca125 after surgery

I'm afraid your gyn/onc doesn't sound like he's taking things as seriously as you need him to. Is there any way you can switch doctors? He may be right -- it could be nothing to worry about. My doctor says they usually don't worry or do all that much until a CA125 hits 100. Mine was 161 before surgery and 17 after surgery, and is now "less than 6.3," which is the lowest my HMO can measure. But I freak out every month when I get the new test. Not really a total freak out, but it is still a bit nerve-wracking.

Rosalie's numbers have helped me know that numbers can just a lot for a variety of different reasons.

You might want to up your intake of cruciferous vegetables, dark leafy greens and raw vegetables. These are all shown to have anti-cancer activity, so if you're at all worried, it might be a good time to watch your diet closely to see if the number doesn't stop moving up, or if it goes back down. Both my nutrionists recommend 7-9 servings of vegetables a day. It's hard to get that much in, but I try!

Keep us posted! s!
  #9  
Unread 01-20-2004, 05:37 PM
Hi Everyone

I can appreciate the green veggies help. Unfortunately before my dx with cancer I was on a bag of broccoli wockilli (broccoli cut up sold in the Northwest) a day. I don't think it helped me!

I do need to switch doctors. There is huge history behind my dx or rather lack of, and doctors not listening to symptoms.

I'm going to MD.

I hope all is well with you all.

I've gained mega weight since my hysterectormy. I hope to someday lose the 60+ lbs I attribute to premarin & estratest.

coffeebean
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