Normal CA125 and recurrence

Flufff
Flufff Member Posts: 67
edited May 2019 in Uterine/Endometrial Cancer #1

Hi all. 

Okay, so in September 2018 I got the lovely diagnosis UPSC stage 4. Did 3 taxol/carboplatine, it luckily worked, so surgery on dec 27th and finished of with 3 times chemo. Ended chemo on feb 27th  

Then on the day of my cat scan, march 20th.  I got this excruciating pain in my abdomen . I went ahead with the scan, as I had to wait for 3,5 weeks to rebook. I could only drink 1/3 of the contract thing. Everything came back up. I was in total agony. Like never experienced before. So, long story short. I had a bowel obstruction. And I had to have emergency surgery :(

on this cat scan they saw something in my spleen. Had to have a pet scan, but had to wait for 6 weeks, due to resent surgery. 

From the beginning of this journey, my CA125 was elevated, and it declined during treatment. It’s now 13. But the weird thing is that it seems like thw cancer is back (or never really left) now. I just thought that if your CA125 was affected by the cancer, it would me a liable marker. 

I cant figure out exactly what the pet scan says. I’m having a meeting with my oncologist Monday. 

Could the FGD uptake be due to inflammatio? My bowel surgery was March 20th. 

It seems like something lit up in my abdomen (muscles) The thing in my sleep pen got smaller over the last 5 weeks (without treatment) 

I’m just so cumfused. I really thought I was in the clear, because of my CA125. At it highest, it was 303. Now 13...

Anybody experience anything like this?

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    edited May 2019 #2
    Fluff

    PET scans can light up with inflammation,  CA125 is not always a good marker.   Its not for me.   Mine was 21 after surgery.  Because they didn't know I had cancer, they never tested it prior.  I have had 2 recurrences since my original diagnosis and my CA125 isnt affected by it.  

    Recently, I have been having problems with drinking the constrast for scans.  (I get scanned every 3 months)    I get almost instant diareah.   After this most recent time, I said no more contrast. I have a MRI and a CT scan set for May 23rd this month without contrast.

    I also get these stomach pains until I vomit and then I get diarreaha.   At first they thought it could be a partial blockage, but I just had a small bowel follow thru (talk about Yucky contrast - its the worst) and they couldn't find anything.  While I was almost through with the test, I was getting low stomach pains and had they scan it.   They said it was nothing.

    On one of my scans, my fundus lit up, but that was after one of my episodes.

    When you get a PET scan, you have to be careful of what you eat the day before, no strenuous exercise, etc. or that could affect the scan results.  Also, if you are diabetic, it can give false positives.

    Your doctors may just wait and take another scan in 3 months.'

    I hope some of this information is helpful to you.

    Kathy

  • barnyardgal
    barnyardgal Member Posts: 272 Member
    #3
    My doctor had me due a pet

    My doctor had me due a pet scan about 5-6 months after I finished chemo and radiation. She said any earlier and it would light up from the effect all the inflammation the treatment caused. I think surgery would cause the same inflammation.

  • DebiR
    DebiR Member Posts: 38 Member
    #4
    Kaleena said:

    Fluff

    PET scans can light up with inflammation,  CA125 is not always a good marker.   Its not for me.   Mine was 21 after surgery.  Because they didn't know I had cancer, they never tested it prior.  I have had 2 recurrences since my original diagnosis and my CA125 isnt affected by it.  

    Recently, I have been having problems with drinking the constrast for scans.  (I get scanned every 3 months)    I get almost instant diareah.   After this most recent time, I said no more contrast. I have a MRI and a CT scan set for May 23rd this month without contrast.

    I also get these stomach pains until I vomit and then I get diarreaha.   At first they thought it could be a partial blockage, but I just had a small bowel follow thru (talk about Yucky contrast - its the worst) and they couldn't find anything.  While I was almost through with the test, I was getting low stomach pains and had they scan it.   They said it was nothing.

    On one of my scans, my fundus lit up, but that was after one of my episodes.

    When you get a PET scan, you have to be careful of what you eat the day before, no strenuous exercise, etc. or that could affect the scan results.  Also, if you are diabetic, it can give false positives.

    Your doctors may just wait and take another scan in 3 months.'

    I hope some of this information is helpful to you.

    Kathy

    Drinking contrast

    I never had problems with the contrast but it might be worth noting that I had one CT Scan at a different facility and they just had me drink water.  I asked about it and they acknowledged that some have you drink that stuff but for their machine only water was needed.  Might be worth checking into if the contrast drink makes you queasy.  I didn't think to ask if their machine was newer or older than the other facility.  Both are in the University Hospitals system in the Cleveland area.  I drank water at the main campus downtown Cleveland.

    Debi

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