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Large ovrian cyst and raised ca125 levels

Posted , 9 users are following.

becca62454
becca62454

Hi I've recently been told I have a 7 by 2 cm ovrian cyst . They took blood and found i have raised ca125 levels and they are concerned. Had my bloods done again and will get results Tuesday. If the levels are the same or higher I'll be fast tracked to see a gyno. I'm 24 with 2 young children and terrified it may be cancer as doc said it can't be ruled out !! Please help I'd appreciate any advice or similar situations

0 likes, 42 replies

42 Replies

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  • sheri44006
    sheri44006 becca62454

    Posted

    Lots of things can raise that test. i have heard most Dr's do not rely on that to heavily, I had a 7,5 cyst removed last year. They may just see if yours goes away on its own

    • becca62454
      becca62454 sheri44006

      Posted

      Hiya thanks for your reply. Did you have ca125 levels checked? I wasn't to worried at first until they start talking about cancer . At the scan he didn't day what kind of cyst it is, I have asked since but no one's telling me anything. Waiting is so hard. I can't help but think the worst

    • sheri44006
      sheri44006 becca62454

      Posted

      Yes I had the blood test also and it was in the normal range, however I have heard of many many women who have had elevated blood results and they did not have cancer. I think the odds at your age are slim although even if it was you are dealing with it head on and getting it taken care of.
    • becca62454
      becca62454 sheri44006

      Posted

      I'm hoping they sort put sooner rather than later . I'm holding onto the fact I'm young and haven't had the menapause. Hopefully it'll have shrank . X

  • didi1956
    didi1956 becca62454

    Posted

    becca  most cyst arent cancerous. Lot of thing raise the ca 125 I had a large cyst and mine was raised and it wasnt cancerous.Try not to worry my doctor dosent believe they should be used as they are so unreliable.
    • becca62454
      becca62454 didi1956

      Posted

      Thank you. That's good to know . I haven't a clue how high it even is! I'm hoping that regardless of what my test results come back as , they'll book me in for another scan asap , they were thinking if re scanning in October but that's so far away. Did you have your cyst removed? X

    • didi1956
      didi1956 becca62454

      Posted

      Yes  I  had a total hysterectomy mine was huge 37cm on one ovary and 3 cm on the other its been a little over 2 months for me. Maybe they want to rescan then to see if its any smaller. Cyst are very common most at your age resolve themselves.Try not to worry. Im sure you will be fine.
  • samantha1970
    samantha1970 becca62454

    Posted

    Could you ask for a copy of your test reports so you can see exactly what type of cyst they suspect and exactly what the ca125 level is? 
    • becca62454
      becca62454 samantha1970

      Posted

      Not sure , but I think I'll definitely ask and find out. When I last saw my doctor I asked if she knew what kind it was and she just said that on the report from the hospital no detail was given other than Size and location .worth a try though x

    • samantha1970
      samantha1970 becca62454

      Posted

      Def ask and ask for the CA125 level. You have a right to have a copy of the results. Are you in the UK?
    • samantha1970
      samantha1970 becca62454

      Posted

      Good luck. When I was rushed to the breast clinic last month they sent a copy of the report which was for the doctors surgery to my house. Hopefully you have a file number with the hospital and can obtain a copy 😊

    • becca62454
      becca62454 samantha1970

      Posted

      Hope so. It's all I can think about . I was ok until the doctor said she wasn't happy and cancer was a possibility. It was like a smack in the face x thank you for your help and replying z

    • top00104
      top00104 becca62454

      Posted

      Hi you should be able to get a copy of your scan and the reports of diagnostics I am in New Zealand and it is possible  I think the UK is the same.
  • BeenthereSr
    BeenthereSr becca62454

    Posted

    Becca,

    My CA 125 numbers were super high and told I had cancer. That was by gyno. I had a huge cyst on each ovary and many smaller ones. For 2 weeks I was making end of life decisions!

    Finally got in to surgeon, 97% sure not cancer. I relaxed significantly and TG he was right. Cysts, endometriosis, etc. can elevate CA 125 blood levels. It's just one piece of the diagnostic puzzle. Majority are benign but they can't tell for sure until they go in. They do testing to confirm. Mine was caused by previously undiagnosed endometriosis.

    So please try and relax. You need a gyno referral anyway. I assume you're in the UK. I don't understand why GPs are so slow to refer women to gynaecologist when there is a gynaecological problem. Wait and see torturing women for months. Impeding access to the care they need.

    Type of cyst will influence treatment plan. Some do eventually resolve on their own. It doesn't sound like you're in pain which is good, but based on the size it likely needs to be removed.

    When you get the gyno referral ask for one with cystectomy expertise. (Just removing cyst and not ovary). Sometimes the cyst has taken ovary and it needs to be removed too. But if not, better to preserve ovary if possible. Based on your age I would think default would be to preserve but better to be sure.

    It's difficult to determine type of cyst from just a ultrasound. Ask about MRI or CT. Much better resolution and detail to aid diagnostics.

    Make a list of questions, be sure you are answered and understand the answers. Don't be shy about asking for a better explanation. Some Drs. are so technical and speed through forgetting most patients don't understand the lingo.

    Hope this helps. Take one step at a time and don't assume the worse. Best wishes for speedy resolution.

    • becca62454
      becca62454 BeenthereSr

      Posted

      Thank you so much for your reply. She did rush through very fast and said they were going to watch and wait. It's like mental torture. I often feel stupid asking questions and feel like I'm wasting time and keeping them from something more important. But after reading your reply I realise asking g questions and understanding what they are saying is very important. I'm going in for results on Tuesday and will keep you posted. Fingers firmly crossed x

    • BeenthereSr
      BeenthereSr becca62454

      Posted

      Your Dr. is the professional you partner with to maintain/restore your health. You should feel informed and trust you have a complete understanding. Not dismissed and shuttled through.

      Keeping you in my thoughts. XXX

    • bhav525
      bhav525 BeenthereSr

      Posted

      Hello Samantha,

      I have 3 cm cyst in left ovary...but it's extremely painful during first day of PMS. I have it for 4 months now.dr. Saying to wait and watch, but due to severe pain I don't know how long I can wait. Were yours cyst painful? If so what you used for pain reduce? Every month I go to so much pain... Like last stage of labor pain...

    • top00104
      top00104 becca62454

      Posted

      That is the worst thing knowing that you have something there. But in a way detecting it earlier gives you a better chance for treatment. I was afraid and stressed out when I found out about what I have, but I did not stop asking questions and also feeling bad about the many questions I asked just like you. I am not afraid any more many thanks to the discussions from everybody. I am going for second opinion before sugery. Best wishes
    • samantha1970
      samantha1970 bhav525

      Posted

      Unfortunately I found that doctors won't intervene when they find a simple cyst less than 5/6cm and opt for the watch and see approach. Personalily I don't have pain with mine, but my friend is like you and has intense pain when hers pop. Sorry i can't recommend anything as I'm not in that position. Take care 

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