ca125 numbers

Hi I am new to this. 5 years ago I was diagnosed wit stage 3c metastatic high grade carcinoma with features of serous carcinoma.After 2 sugarys and 8 rounds of chemo I am doing ok.my last check up showed my ca125 was 10 which is the highest it’s been since I finished treatment, the one before that was 7, I am very nervous about this but my doctors say it’s ok and not to worry,just wondering if anyone has had a similar experience.
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Comments

  • FlowergirlFlowergirl Mod Vol
    Hello @Tara ; - welcome to the site. Thank you for sharing your story and glad to hear you are doing ok after those surgeries and chemo. 
    Worry in general (and about the numbers) is something many of us struggle with from time to time. Hope you will find lots of support here around the topics.
    I found it helpful by asking lots of questions of my health care team and reviewing the By Your Side resource.
    Depending on your condition and your health care team, sometimes those numbers are only one part of the assessment tools. Do you have an outline on how the health team is monitoring you?

  • TaraTara
    Thank you @Flowergirl for you kind words. I see my gynacogal  oncologist every 6 months, she does an internal exam and checks my ca125 and that’s all I haven’t had a ct scan in 5 years as she states there is no need for it.
  • My CA125 hovers between 8 and 10 - both of which my oncologist is very happy about. Cause for concern is when the number rises significantly - doctor says if that happens they will test again within a couple of weeks to see if it remains higher. Then the investigation begins.
  • TaraTara
    Thank you Kastoyles for responding to know that someone else’s ca125 also is at the same level as mine is very comforting 
  • Hi @Tara.  It is common for women to be concerned about test results so you are not alone!  A CA125 reading can fluctuate from time to time and a reading under 35 is considered normal.   There is lots of help on this site if you have other questions or concerns!
  • TaraTara
    edited June 12
    Marlyn, Thank you so much for your advice it has eased  my worries.
  • Hi @Tara.  I'm glad that you are less anxious about things now.  Just a note about how to use the "@ feature in OVdialogue.  If you want to address someone directly, use @ in front of their name and the person will receive a notification that you have Tagged" them.  :)
  • Ok thank you @Marilyn
  • JanJan
    Beware that ca125 numbers are not always a valid indicator. I had this blood test done about 6 weeks before hysterectomy surgery. Surgery found ovarian cancer, stage 1C, but the ca125 number was in the normal range.
  • Thank you @Jan for that information 
  • Yes, thank you @Jan for that insightful comment - it is important for those out there that have not officially been diagnosed, are experiencing symptoms and to perhaps "educate" or remind their doctors.
  • Anything under 35 is good.. I know for some people this test is not  always valid but for others it is a good marker .. For me it has always been good.. My original numbers were 2800... Then after surgery and chemo the were always  between 9 and 13... last year they went to 48 and I had CT scan  .. They found a spot and I had surgery and they removed 5 nodules.. No chemo and my numbers are back to 9.. Good marker for me.. try not to worry Under 35 is good


  • Thank you @irishsurvivor I have been feeling a lot better hearing all these positive messages, I take it from your name you are Irish me too I am from Dublin 
  • edited July 13
    Yes @Tara I am Irish  I am also from Dublin... Finglas West to be exact.. Glad you are feeling better  It really does help to hear the positive side of things...


  • It sure does @irishsurvivor I am from Coolock north side But living in Barrie Ontario 
  • Small World @Tara I am in Barrie also !!!
  • @irishsurvivor small world, may I ask when were you diagnosed 
  • Sure.  I was diagnosed in 2012. Stage 3 High grade serous carcinoma.  I had chemo then surgery then more chemo.  All was good until last year. But after surgery again I am back in remission. I just had Genetic testing done 2 weeks ago.  I consider myself to be very lucky.  
  • Thanks @irishsurvivor for that info I was diagnosed in 2013 stage 3c high grade serous carcinoma also had surgery then chemo then surgery and chemo again also did genetic testing and I was negative which I was so grateful for as I have a daughter and was so worried for her. I would appear we have had a similar journey.
  • Where did you get your treatment and surgery.  I go to Odette Centre at Sunnybrook 
  • Yes I am concerned about testing. It can effect boys also ie.. Prostrate Cancer. And I have a Granddaughter   Waiting in results and staying positive.  Do you do the walk in Sept
  • Yes I was very worried about the testing as my brother had be diagnosed with prostrate cancer 10 years before my diagnosis but thankfully was negative and I hope you also have a good result I know the waiting is worrisome. No I have not done the walk but would love to do it this year.
  • @Tara glad to hear about your brother.  Did you get your treatment in Barrie?  Would love to see you at walk. I have been doing it every year since 2013.
  • @irishsurvivor yes had treatment in Barrie with Dr Sarah Rask and surgery at Toronto General hospital with Dr Sarah Ferguson I hope to be at the walk in September are you part of a team doing the walk.
  • @irishsurvivor I will keep my fingers crossed for you with the results from you genetic test 
  • @Tara. Yes my team name is Sullys Striders.  Sully for my maiden name O’Sullivan of course.  Thank you I am staying positive.  Every day is a blessing.  We get through it and come out a different person on the other side. Good to have people to share with that know how it feels.  
  • Yes I agree nobody knows what you have been through unless you have walked down the same road. I am here if you ever need to talk and I appreciate you words of advice and your support.
  • My sister recently moved to Alberta. She is an OC survivor. She registered at the Cross Centre in Edmonton for them to take over her care from Saskatchewan. They told her on her first visit that Alberta Health no longer does CA125 testing. They told her that “on average” it doesn’t make a difference in overall survival. She was floored. Did she misunderstand something or is this accurate? Because she is in remission they said they won’t use that test. Can anyone shed any light on this please? I am still being treated in Saskatchewan and still receiving this test. Thanks. 
  • @dmas125 ; If I understand correctly the CA125 is not a very reliable test for some women because they do not show a sensitivity to whatever is being tested in the CA125 test.  Many women have normal numbers under 35 but still have ovarian cancer at some point found through other ways when symptoms show.  That is one reason why it is not caught early.  If it does not show a sensitivity some doctors will not bother using it.  My CA125 reading appears to be very sensitive and hits the thousands before treatment.  I have recurred.  But it is so high it is a bit strange.  The doctors use the trend not the number.  That may explain why it is not being done in Alberta.  So inaccurate and unreliable in cases. 

    If your sister's numbers show sensitive then maybe she can have it done on her own and pay for it in Alberta.  Before I was diagnosed I had it done in Ontario as part of a checkup and I had to pay for it.  It cost about $25-$35.  Cannot recall.   

    I hope that helps you out.  Take care and good luck to your sister.


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