Another CA-125 question

Pat51
Pat51 Member Posts: 130
in Uterine/Endometrial Cancer #1

Hi Gals,

I do not post often but I do read on the board.  I have UPSC.  I finished treatment about 4 years ago and have been NED since then...YEAH!!  My oncologist retired at the end of last year and I got another oncologist in the same practice.  When I was diagnosed my CA-125 was 22.2...not high.  After surgery it went up to 87.7 and came down with each chemo treatment at one point it was down to 7.3 then it jumped to 16.3 and then varied in the 12-16 point range.  Last year at this time it went back up to 16.6 and has been steadily rising for the last 5 CA-125 tests.  Yesterday it was up to 20.8 nearly what it was when I was diagnosed.   I had a scan in June that was clear but CA-125 kept rising.  This whole thing scares me since the doctor seems to keep looking for recurrence.  I am thinking that when I see him on Thursday he may want to do a PET scan.  He does watch my CA-125 closely.  Has anyone had a situation like this and what were the results?

I know that there are ladies in much worse positions than mine and I pray for you brave warriors daily.  

Would a PET scan be a normal follow up in this case?  I have not had a PET so far in my cancer journey.  I would appreciate hearing from anyone that has had an experience similar to this.

Thanks,

Pat

Comments

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #2
    Pat, when I get the card

    Pat, when I get the card mailed to me from my gyn onc's office it says "Normal is anything between 0 - 35".  Now, CA125 is just a tool.  A cold, slight infection, both are things that can increase your numbers.  Now, if my numbers started to climb and were still within that "normal" range I would be worried myself.  

    I have never had a PET, I understand they ARE expensive and some of the ladies here have had a problem getting insurance to cover them.  I am sure one of the other ladies here can comment. 

    If you are looking for a little more explanation on CA 125 you may want to check this out.  I know it says OC, but agressive uterines are treated like OC:

    http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

     

  • Pat51
    Pat51 Member Posts: 130
    #3
    NoTimeForCancer said:

    Pat, when I get the card

    Pat, when I get the card mailed to me from my gyn onc's office it says "Normal is anything between 0 - 35".  Now, CA125 is just a tool.  A cold, slight infection, both are things that can increase your numbers.  Now, if my numbers started to climb and were still within that "normal" range I would be worried myself.  

    I have never had a PET, I understand they ARE expensive and some of the ladies here have had a problem getting insurance to cover them.  I am sure one of the other ladies here can comment. 

    If you are looking for a little more explanation on CA 125 you may want to check this out.  I know it says OC, but agressive uterines are treated like OC:

    http://www.foundationforwomenscancer.org/wp-content/uploads/Understanding-CA125-Levels-2015.pdf

     

    NoTimeForCancer

    Thank you so much for the link.  I will read it.  Thank you again.

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #4
    PET scans

    hi Pat

    PET scans are fine.  They only measure active cancer.  Sometimes they do a PET/CT which combines two tests into one.    Cat scans measure mass sizes etc but can't always indicate if they are cancerous. Wherein PET scans measure active cancer.   Cancer us attracted to sugar.  So the day before you try to eat a low carb high protein diet.  Then they give you a radioactive isotope (basically radioactive sugar water).  If you have active cancer it will light up on test.   Of course it is also not always a good indicator.  

     

    since January of 2014 I have had a CT scan. 4 PET scans a PET/MRI and other testinss including biopsy.   My soft tissue mass is mild to moderate PET positive but the biopsy of part of mass was negative.   It is confusing nonetheless. 

    Further a PET scan (Not PET/CT) actually has less radiation exposure than a CT.   However if you are a diabetic this test may not be right for you

    if you have any other questions let me know 

    kathy

  • Pat51
    Pat51 Member Posts: 130
    #5
    Kaleena said:

    PET scans

    hi Pat

    PET scans are fine.  They only measure active cancer.  Sometimes they do a PET/CT which combines two tests into one.    Cat scans measure mass sizes etc but can't always indicate if they are cancerous. Wherein PET scans measure active cancer.   Cancer us attracted to sugar.  So the day before you try to eat a low carb high protein diet.  Then they give you a radioactive isotope (basically radioactive sugar water).  If you have active cancer it will light up on test.   Of course it is also not always a good indicator.  

     

    since January of 2014 I have had a CT scan. 4 PET scans a PET/MRI and other testinss including biopsy.   My soft tissue mass is mild to moderate PET positive but the biopsy of part of mass was negative.   It is confusing nonetheless. 

    Further a PET scan (Not PET/CT) actually has less radiation exposure than a CT.   However if you are a diabetic this test may not be right for you

    if you have any other questions let me know 

    kathy

    Kaleena

    Thanks for the info.  I live alone since my husband passed away and have come to this site just for some input from others since I have no one to talk to about this disease.   I will let everyone know what the doctor advises after my next appointment. Thanks again.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #6
    Pat51 said:

    Kaleena

    Thanks for the info.  I live alone since my husband passed away and have come to this site just for some input from others since I have no one to talk to about this disease.   I will let everyone know what the doctor advises after my next appointment. Thanks again.

    Pat, you are not alone.

    Pat, you are not alone.  Please know that. 

  • Pat51
    Pat51 Member Posts: 130
    #7
    NoTimeForCancer said:

    Pat, you are not alone.

    Pat, you are not alone.  Please know that. 

    NoTimeForCancer

    Thank you.  I cannot believe how wonderful, informative and supportive everyone on this board is!! 

    I took a vacation from cancer for a while.  After I recovered from treatment and got back to work,  my husband, who was a stage 4 melanoma patient got worse.  The meleanoma went to his brain.  I was very grateful that I was strong enough to care for him before his death.  After his cancer and mine I tried not to think about cancer for a while.  I would come back to board and lurk occassionally.  I have no one to talk to about this disease since his death.  I am very grateful for the response that I receive here.

    Thank you again.

  • survivingsu
    survivingsu Member Posts: 134 Member
    #8
    Pet Scans

    I only had a couple PET scans and a bunch of CT scans.  They tended to use the PET scan when the CT picked up something suspicious, to further investigate.  I remember one time the PET scan simply indicated that the suspicious sighting on the CT scan was only scar tissue.  At any rate, I was very nervous for every single scan I had.  But I got through it, you will too.

    Sending best wishes,

    Susan

  • Lily_Anne
    Lily_Anne Member Posts: 39
    #9
    I had a clear scan in June

    I had a clear scan in June but my CA125 level rose again. I had a CT scan which identified a tumour 3x2cm and have an MRI scan on Saturday. I wish you all the best.

     

    LA xx

  • Pat51
    Pat51 Member Posts: 130
    #10
    Lily_Anne said:

    I had a clear scan in June

    I had a clear scan in June but my CA125 level rose again. I had a CT scan which identified a tumour 3x2cm and have an MRI scan on Saturday. I wish you all the best.

     

    LA xx

    Lily _Anne

    I am sorry to hear about your CT findings. I hope that all goes well with MRI and that things are not as bad as they seem in your mind at this time.  How high did your CA-125 go?  You will be in my prayers. 

  • Pat51
    Pat51 Member Posts: 130
    #11
    Update

    I said that I would let everyone know what course of action was advised at my appointment.  I saw my PA at my appointment and she is having another CA-125 drawn in 4 weeks and another 3 1/2 weeks after that along with a oncologist appointment.  She is suggesting another CT be done in December.  I do have a lot of scar tissue from my surgery and have some pulling in my abdomen.  I am still hoping that this turns out to be nothing but none the less worry.

    Pat

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,360 Member
    #12
    Pat51 said:

    Update

    I said that I would let everyone know what course of action was advised at my appointment.  I saw my PA at my appointment and she is having another CA-125 drawn in 4 weeks and another 3 1/2 weeks after that along with a oncologist appointment.  She is suggesting another CT be done in December.  I do have a lot of scar tissue from my surgery and have some pulling in my abdomen.  I am still hoping that this turns out to be nothing but none the less worry.

    Pat

    Pat, it sounds like they are

    Pat, it sounds like they are taking notice and going to monitor you a little more closely.  That is great.  I think we all realize the angst you feel, that fear we all live with as well.  Oh how I pray they find a cure for this disease.

  • LA123
    LA123 Member Posts: 41 Member
    #13
    CA125 range

    Hello there, I am no specialist, but I read something on the Mayo Clinic website about CA125 levels being affected by lots of other benign, totally unrelated to cancer issues such as pancreatic function, diverticulitis, etc.  Again, all those things are worth following up on if persistant, but that small fluctuations of CA125 levels need not be a reaosn for concern, so long as the level remains below 35 (considered normal).    I do hope you stay strong and healthy and have peace in this.

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