Elevated CA 125 opinion is needed

ona

My CA 125 elevated from 11 at the begining of October to 26 on November. CT scan was OK, no recurrence. Anyone had elevated CA 125 in a very short period such as mine? I feel scared, going back at chemo is hard. Anyway, the doctor says that there will be no treatment till a tumor will show up on CT scan.Doctor thinks I will not benefit if I start chemo at this point. His recomandation is to wait for the blood test result next month.Any opinion?

carolyn45

You can be calm
CA 125's go up and down and around for a variety of reasons, so as long as you're in the normal range, there's no need to worry. Research has shown that there is no benefit of having more chemo until there are real symptoms of recurrence--either with a positive cat scan or definite symptoms you can feel in your body. Take some deep breaths and enjoy every day.

froggy1

carolyn45 said:

You can be calm
CA 125's go up and down and around for a variety of reasons, so as long as you're in the normal range, there's no need to worry. Research has shown that there is no benefit of having more chemo until there are real symptoms of recurrence--either with a positive cat scan or definite symptoms you can feel in your body. Take some deep breaths and enjoy every day.

There is no "normal" CA125
I just felt I had to comment on the CA125 "normal" issue. This number is so individual and you cannot really count on the "normal" range to mean you are OK. It is a very unique number and you get to know your own pattern. My first recurrence happened when my CA125 was 16. I was given a CAT for a possible bowel obstruction and the cancer showed up. I went through 9 months of treatment, just went back for my three month and my CA125 went from 10 to 17. For me, I know this is not a good sign. My doc will repeat the test shortly, then order a CT/PET. For me, the CA125 is not a good indicator.
That being said, I agree that most docs do not favor treating you unless you have signs, not sure they can from an insurance standpoint! Nor do you want to go through chemo without a reason.
It's so weird. Some people would be thrilled with a CA125 of 17, I cried. Go figure.
Best of luck, Ginny

mopar

DON'T WORRY, ONA
The ladies are right - lots of things can cause a rise. And typically they don't do anything till something shows up. I remember my CA125 shot up from 9 to 42 one time! I had taken the one dose of Boniva that my doctor gave to me. You can bet I won't be doing that again. And a cold or infection or even stress can raise it. My experience has also shown that overindulgence in certain foods can also cause an elevation in numbers, at least for me. So, hang in there - let us know what your results are next month.

Monika

LaundryQueen

mopar said:

DON'T WORRY, ONA
The ladies are right - lots of things can cause a rise. And typically they don't do anything till something shows up. I remember my CA125 shot up from 9 to 42 one time! I had taken the one dose of Boniva that my doctor gave to me. You can bet I won't be doing that again. And a cold or infection or even stress can raise it. My experience has also shown that overindulgence in certain foods can also cause an elevation in numbers, at least for me. So, hang in there - let us know what your results are next month.

Monika

Sorry you are worried
The truth is that there is no way to predict what is going to happen. I don't even know what your odds of having a recurrence are--what we all know is that ovarian cancer has a reputation for showing up again and again. My CA-125 only stayed down for a few months then it kept doubling every month.

I held off on treatment until the CA-125 was over 200--I never felt any symptoms & the CT showed no changes. However, the cancer showed up on a PET scan. The PET scan will show active cancer that might not show up on a CT scan. My oncologist wouldn't order the PET scan for me so I had to get it ordered from my family doctor--it was a hassle to get the pre-authorization done. But at least I knew what was going on.

If you feel good, focus on that. There's not much you can do at this point except wait.

I don't know how you feel about clinical trials, but you might consider looking into what might be available IF you did have a recurrence. Even though you dread the thought of going on chemo again, there are some new therapies for ovarian cancer that look hopeful.

(((hugs)))

ona

LaundryQueen said:

Sorry you are worried
The truth is that there is no way to predict what is going to happen. I don't even know what your odds of having a recurrence are--what we all know is that ovarian cancer has a reputation for showing up again and again. My CA-125 only stayed down for a few months then it kept doubling every month.

I held off on treatment until the CA-125 was over 200--I never felt any symptoms & the CT showed no changes. However, the cancer showed up on a PET scan. The PET scan will show active cancer that might not show up on a CT scan. My oncologist wouldn't order the PET scan for me so I had to get it ordered from my family doctor--it was a hassle to get the pre-authorization done. But at least I knew what was going on.

If you feel good, focus on that. There's not much you can do at this point except wait.

I don't know how you feel about clinical trials, but you might consider looking into what might be available IF you did have a recurrence. Even though you dread the thought of going on chemo again, there are some new therapies for ovarian cancer that look hopeful.

(((hugs)))

Thank you so much for your
Thank you so much for your replies ladies.
I am on a trial. Unfortunately, this trial was randomly based. I was not selected from the computer to get chemo once a month for a full year. I was selected to get the CA 125 tested every month.
I am worry because my CA 125 on August was 5, than on September 7, on October 11, and November 26 or28. I have heard that a double increase in CA 125 within a three months period is a very bad sign. Mine was more than doubled within a month.
I had a flu shot at the middle of October. I am not sure if a flu shot can elevate the CA 125.
I really appreciate your replies. Those are very helpful to me.
Happy Thanksgiving
God bless all of us.
Hoppe….

zenisthou

ona said:

Thank you so much for your
Thank you so much for your replies ladies.
I am on a trial. Unfortunately, this trial was randomly based. I was not selected from the computer to get chemo once a month for a full year. I was selected to get the CA 125 tested every month.
I am worry because my CA 125 on August was 5, than on September 7, on October 11, and November 26 or28. I have heard that a double increase in CA 125 within a three months period is a very bad sign. Mine was more than doubled within a month.
I had a flu shot at the middle of October. I am not sure if a flu shot can elevate the CA 125.
I really appreciate your replies. Those are very helpful to me.
Happy Thanksgiving
God bless all of us.
Hoppe….

Treat symptom, not the CA125
I had first recurrence in April 2011 and I had HIPEC surgery to treat the recurrence on July 22. My CA125 was 171 in Agustin test, 220+ in Sep. test, and 430+ in Oct. test. I am still not on chemo as of now because I don't want to treat the number. I feel great physically, eat well, sleep well, still hiking everyday, and involve many volunteer works. When it comes to recurrence, ther's no benefit for early treatment. I made the decision not to jump into another chemo also because I believe that my cancer cell is an extreme cancer resistance case. I am now doing research to find opinions about my situation.

While we all worry about the possible recurrence, we have to practice not to let the worrisome bother us day in and day out. When there's evidence of recurrence, we just face the fact, accept the fact, deal with the fact with all the best, and then, let God to take care of the rest; whatever it will be.., I hope you don't see it as pessimism bevause it is actually the other way around if you think through about it.

Wish you the best!

Tracy

Hissy_Fitz

ona said:

Thank you so much for your
Thank you so much for your replies ladies.
I am on a trial. Unfortunately, this trial was randomly based. I was not selected from the computer to get chemo once a month for a full year. I was selected to get the CA 125 tested every month.
I am worry because my CA 125 on August was 5, than on September 7, on October 11, and November 26 or28. I have heard that a double increase in CA 125 within a three months period is a very bad sign. Mine was more than doubled within a month.
I had a flu shot at the middle of October. I am not sure if a flu shot can elevate the CA 125.
I really appreciate your replies. Those are very helpful to me.
Happy Thanksgiving
God bless all of us.
Hoppe….

My CA125 hung out between 7
My CA125 hung out between 7 and 9 for the longest. Then it jumped up to 19; the next two months, it was 18. I had surgery in Aug to repair a really big incisional hernia and both my gyn/oncologists blamed the spike on that, but it has only dropped a point since Sept. A number that doubles in a matter of weeks always makes us fret but most doctors don't get excited unless it jumps up into the hundreds, simply because so many things can affect it. I get mine checked again in January. Until then, unless I have symptoms, I will just try not to focus on "what if."

I've been playing the numbers game for over 2 years. I never managed to reach a point where it didn't make me crazy, though I have certainly tried.

Laundry Queen...no one knows for sure what our chances are of recurring but the stats say that out of 100 diagnosed Stage III or IV, 15 will never achieve full remission and 85 will respond completely to first line chemo (following surgery). Out of those 85, 64 will recur, and most of them will recur within 24 months. The stats are just numbers too, though. They don't mean anything, in and of themselves.

Nancy M had her first recurrence confirmed recently - after a 4 year remission. Anniecris was over two years out when she recurred, and Jayne Armstrong's first remission lasted 3 1/2 years. I personally know one woman who was diagnosed at a late stage (IIIc) and is still in remission after 12 years. Unfortunately, she is the only one I know that has had such a long remission. I think there is one on the Inspire board, so that would make two, I guess.

There is a woman in my real life support group (diagnosed at stage I) who suffered a recurrence after 10+ years in remission. Her doctor told her at the time that there was a 95% chance it would never come back. So there you have it; don't bet on the numbers.

Carlene