Elevated CA125

NRichard
NRichard Member Posts: 12
in Uterine/Endometrial Cancer #1
Diagnosed with stage 1b uterine cancer. Had 6 rounds of chemo and radiation. I had a Pet Scan after treatment in which 2 small nodules were discovered. They did a lung resection and biopsy and they came back as an inflammation. Good news. All the rest was clean.
I had my first follow up visit and everything was good except they were not supposed to do blood work. The P.A. ordered it anyways and my CA125 was in the 90's. It had been at 11 during and after treatment.
They said not to worry this is why they didn't want the test. They are going to retest in 4 weeks to see if going down. Said not to worry and to go ahead and take my port out.
Apparantly surgery and inflammation causes the CA 125 to rise.

Originally they wanted to wait 3 months after surgery to run the CA125 test.

Of course I am worried. Has anyone else ever heard of this.

Thanks for any input.

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    #2
    Hi N
    Well, I still have my port after nearly 3 years. Reason - I have a high grade recurrent uterine cancer - papillary serous carcinoma. One doc originally said to remove port after 1 year but I chose to keep it in. I recurred about 14 months post treatment and eventually returned to tx. My doc looks at TRENDS in ca125 over many months and large leaps in a short timeframe.

    So your "type" of uterine cancer would be significant to me. If you have a non aggressive stage 1 cancer then your odds of recurrence are lower. I'm guessing your medical team thinks all is good for you.

    Good that You are asking questions here. Continue to educate yourself, ask questions, and trust your gut.

    My best to you. Mary Ann
  • NRichard
    NRichard Member Posts: 12
    #3
    daisy366 said:

    Hi N
    Well, I still have my port after nearly 3 years. Reason - I have a high grade recurrent uterine cancer - papillary serous carcinoma. One doc originally said to remove port after 1 year but I chose to keep it in. I recurred about 14 months post treatment and eventually returned to tx. My doc looks at TRENDS in ca125 over many months and large leaps in a short timeframe.

    So your "type" of uterine cancer would be significant to me. If you have a non aggressive stage 1 cancer then your odds of recurrence are lower. I'm guessing your medical team thinks all is good for you.

    Good that You are asking questions here. Continue to educate yourself, ask questions, and trust your gut.

    My best to you. Mary Ann

    HI
    Thanks for your response.
    It was clear cell but because it was stage 1B they said I can go ahead and take the port out.

    The reason for concern was the high elevated CA 125. But, they said this is because of the inflammation in my lungs and surgery I had 10 days previous. That is why they didn't want the P.A. to have my blood drawn and tested. Now I am worried and maybe unnecessarily.

    I could have had 3 months of not worrying as much if she had followed the doctors orders.
    My Pet Scan was clean. And I will get retested in 3 weeks to see if it has gone down any.
    The doctor says that they see this alot after surgery.

    Thanks and good luck.
  • daisy366
    daisy366 Member Posts: 1,458 Member
    #4
    NRichard said:

    HI
    Thanks for your response.
    It was clear cell but because it was stage 1B they said I can go ahead and take the port out.

    The reason for concern was the high elevated CA 125. But, they said this is because of the inflammation in my lungs and surgery I had 10 days previous. That is why they didn't want the P.A. to have my blood drawn and tested. Now I am worried and maybe unnecessarily.

    I could have had 3 months of not worrying as much if she had followed the doctors orders.
    My Pet Scan was clean. And I will get retested in 3 weeks to see if it has gone down any.
    The doctor says that they see this alot after surgery.

    Thanks and good luck.

    monitoring ca125
    Hi again,

    Clear cell is a high grade (I think 3) cancer.

    My doc told me about a research project where one group monitored ca125 and other did not. Both groups had needed medical treatment and fared about the same. The difference was quality of life better with side that did not monitor - hence, the "worry" factor you talked about.

    So I have opted to NOT be told me ca125 results until I need to make decisions. This is a trust factor with regard to my doctor - I trust him highly. But it also gives me a worry free survellience. You might discuss this with you doc.
  • NRichard
    NRichard Member Posts: 12
    #5
    daisy366 said:

    monitoring ca125
    Hi again,

    Clear cell is a high grade (I think 3) cancer.

    My doc told me about a research project where one group monitored ca125 and other did not. Both groups had needed medical treatment and fared about the same. The difference was quality of life better with side that did not monitor - hence, the "worry" factor you talked about.

    So I have opted to NOT be told me ca125 results until I need to make decisions. This is a trust factor with regard to my doctor - I trust him highly. But it also gives me a worry free survellience. You might discuss this with you doc.

    HI
    Thanks,
    I agree. I didn't want to know the numbers unless necessary. They seem less concerned than me and only want to have a re-do because it was done at the wrong time.
    Telling me to go ahead with the port removal should be reassuring. they wouldn't do this if they thought there was an issue I guess.

    Will feel better after the next test I am sure.
    I see a infectious disease Doctor in a week to find out what kind of inflammation I had in my lung and I would guess how they will treat it. I need to believe this is causing the elevation.
    Thanks again.
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #6
    NRichard said:

    HI
    Thanks,
    I agree. I didn't want to know the numbers unless necessary. They seem less concerned than me and only want to have a re-do because it was done at the wrong time.
    Telling me to go ahead with the port removal should be reassuring. they wouldn't do this if they thought there was an issue I guess.

    Will feel better after the next test I am sure.
    I see a infectious disease Doctor in a week to find out what kind of inflammation I had in my lung and I would guess how they will treat it. I need to believe this is causing the elevation.
    Thanks again.

    Hi.
    Inflammation will cause
    Hi.

    Inflammation will cause a rise in your CA125. Also, if you are uncomfortable with them removing the port, then just wait. I just had mine taken out after 5 1/2 years. I was diagnosed with Endometrial Adenocarcinoma Grade 2 Stage ii/iiia in September of 2005. Had my initial chemo treatment and then 3 bracytherapies and finished treatment in May of 2006. My CA125 never was an indicator. Because they found cancer in my uterus and my left ovary, the doctor didn't want to remove my port. He said to wait a year. Then he retired and all the other doctors kept waiting. I was told it was way easier to take out. The only thing you have to do is get it flushed every 4 to 6 weeks.

    I would probably wait until after the three months to get your port out when you can get a good CA125. Then you can feel confident about removing it.

    I am glad for your good news. My best to you.

    Kathy
  • NRichard
    NRichard Member Posts: 12
    #7
    Kaleena said:

    Hi.
    Inflammation will cause
    Hi.

    Inflammation will cause a rise in your CA125. Also, if you are uncomfortable with them removing the port, then just wait. I just had mine taken out after 5 1/2 years. I was diagnosed with Endometrial Adenocarcinoma Grade 2 Stage ii/iiia in September of 2005. Had my initial chemo treatment and then 3 bracytherapies and finished treatment in May of 2006. My CA125 never was an indicator. Because they found cancer in my uterus and my left ovary, the doctor didn't want to remove my port. He said to wait a year. Then he retired and all the other doctors kept waiting. I was told it was way easier to take out. The only thing you have to do is get it flushed every 4 to 6 weeks.

    I would probably wait until after the three months to get your port out when you can get a good CA125. Then you can feel confident about removing it.

    I am glad for your good news. My best to you.

    Kathy

    Hi Kaleena
    Thanks for the reassurance.

    I prefer to have the port out. And the doc telling me to go ahead is reassuring. I guess that they are not concerned. They are redoing the test in 3 weeks. They don't expect it to be normal just going down. I still have something going on with the lung inflammation and again they weren't supposed to draw the blood for 3 months because of that and the surgery. It's a roller coaster as you know.


    Glad to hear you are doing well.
  • NRichard
    NRichard Member Posts: 12
    #8
    NRichard said:

    Hi Kaleena
    Thanks for the reassurance.

    I prefer to have the port out. And the doc telling me to go ahead is reassuring. I guess that they are not concerned. They are redoing the test in 3 weeks. They don't expect it to be normal just going down. I still have something going on with the lung inflammation and again they weren't supposed to draw the blood for 3 months because of that and the surgery. It's a roller coaster as you know.


    Glad to hear you are doing well.

    Inflmmation
    Has anyone else had their CA125 levels elevate significantly after surgery or inflammation?

    My doctor's nurse told me it happens all the time and that is why they wait to run the test.
    I trust my doctor, but it still is very scary situation.

    Thanks
  • jazzy1
    jazzy1 Member Posts: 1,379
    #9
    NRichard said:

    Inflmmation
    Has anyone else had their CA125 levels elevate significantly after surgery or inflammation?

    My doctor's nurse told me it happens all the time and that is why they wait to run the test.
    I trust my doctor, but it still is very scary situation.

    Thanks

    CA125
    I've heard from others with inflated tumor marker, it can rise when have inflammation and fighting a sickness (cold, allergies, etc). Don't read into it, but definitely confer with your doc.
  • NRichard
    NRichard Member Posts: 12
    #10
    jazzy1 said:

    CA125
    I've heard from others with inflated tumor marker, it can rise when have inflammation and fighting a sickness (cold, allergies, etc). Don't read into it, but definitely confer with your doc.

    CA125
    Thanks for the input from everyone.
    It seemed like such a huge rise from 11 to 90's.

    But, the surgery I had was in the lungs with 2 nodules that were 2 different kinds of inflammation.
    Such a shock to have the rise, but the doctor wasn't.
    I guess this is why he didn't want the test ran in the first place and wanted to wait 3 months. Causes a lot of stress.

    One of the stains came back positive for infectious disease. Will find out what it is next week.

    They are re doing the CA 125 mid September and say it will be down. Hard to grasp sometimes.
    Thanks
  • NRichard
    NRichard Member Posts: 12
    #11
    jazzy1 said:

    CA125
    I've heard from others with inflated tumor marker, it can rise when have inflammation and fighting a sickness (cold, allergies, etc). Don't read into it, but definitely confer with your doc.

    CA125
    Thanks for the input from everyone.
    It seemed like such a huge rise from 11 to 90's.

    But, the surgery I had was in the lungs with 2 nodules that were 2 different kinds of inflammation.
    Such a shock to have the rise, but the doctor wasn't.
    I guess this is why he didn't want the test ran in the first place and wanted to wait 3 months. Causes a lot of stress.

    One of the stains came back positive for infectious disease. Will find out what it is next week.

    They are re doing the CA 125 mid September and say it will be down. Hard to grasp sometimes.
    Thanks
  • Fayard
    Fayard Member Posts: 438 Member
    #12
    NRichard said:

    HI
    Thanks,
    I agree. I didn't want to know the numbers unless necessary. They seem less concerned than me and only want to have a re-do because it was done at the wrong time.
    Telling me to go ahead with the port removal should be reassuring. they wouldn't do this if they thought there was an issue I guess.

    Will feel better after the next test I am sure.
    I see a infectious disease Doctor in a week to find out what kind of inflammation I had in my lung and I would guess how they will treat it. I need to believe this is causing the elevation.
    Thanks again.

    Clear Cell
    I had clear cell adenocarcinoma, stage 2, grade 3.
    I cannot help to wonder I only had 6 months of chemo and not radiation at all.
    My tumor invaded the myometrium, 9mm out f 14 mm, more than 50%.

    My gyn/onco said because he took out all the cancer in the surgery, 58 lymph nodes removed all negative, I did not need radiation. He also said that chemo was used a preventive treatment.

    I guess different doctors have different opinions while following the same protocol.
    Either way, I am also getting my port out, on Thursday, and take this as reassurance from my doctor.

    Hoping your CA125 goes down, so you can feel better.
  • NRichard
    NRichard Member Posts: 12
    #13
    Fayard said:

    Clear Cell
    I had clear cell adenocarcinoma, stage 2, grade 3.
    I cannot help to wonder I only had 6 months of chemo and not radiation at all.
    My tumor invaded the myometrium, 9mm out f 14 mm, more than 50%.

    My gyn/onco said because he took out all the cancer in the surgery, 58 lymph nodes removed all negative, I did not need radiation. He also said that chemo was used a preventive treatment.

    I guess different doctors have different opinions while following the same protocol.
    Either way, I am also getting my port out, on Thursday, and take this as reassurance from my doctor.

    Hoping your CA125 goes down, so you can feel better.

    Clear Cell
    You are similar in stage as I. I was 1B Grade 3. I also was clean in the lymph nodes and the wash was clean.
    I had 6 months Chemo and Radiation. The surgery on the lungs was to remove the 2 benign nodules that were infections. The CA125 was done in error 10 days after the surgery. They say the inflammation and surgery causes it to rise and that is why my doctor did not order the test in the first place.
    Congrats on your port removal. They are telling me to go ahead and remove it also. Even before the next blood test.
    I would have to guess that this is a reassuance also.
    Thanks. And good luck to you.
  • JoAnnDK
    JoAnnDK Member Posts: 275
    #14
    NRichard said:

    Clear Cell
    You are similar in stage as I. I was 1B Grade 3. I also was clean in the lymph nodes and the wash was clean.
    I had 6 months Chemo and Radiation. The surgery on the lungs was to remove the 2 benign nodules that were infections. The CA125 was done in error 10 days after the surgery. They say the inflammation and surgery causes it to rise and that is why my doctor did not order the test in the first place.
    Congrats on your port removal. They are telling me to go ahead and remove it also. Even before the next blood test.
    I would have to guess that this is a reassuance also.
    Thanks. And good luck to you.

    I wonder.....
    I wonder about the efficacy of the CA 125 test. I read this report from 2009 and have not read anything else to refute it:

    http://www.medpagetoday.com/MeetingCoverage/ASCO/14453

    My CA 125 was never elevated so it would definitely not be a predictor for me.

Discussion Boards