8cm Complex Ovarian Cyst with CA125 of 51 - Absolutely terrified!!

I posted on here a few days ago after I found out unexpectedly that I had a large complex ovarian cyst. The consultant thinks it could a dermoid cyst but can't determine this for sure and is sending me for an MRI scan. In the meantime, my CA125 has come back raised at 51!!! I'm postmenopausal which just adds even more risk into the mix and I just feel like the odds are stacking up against me. I've had no symptoms and only got checked out because of a tiny amount of postmenopausal bleeding. I'm all over the place.

  • How strange we all had appointments on the 23rd. Do you think your appointment to get your surgery is so quick because of your previous cancer? I was told I might be waiting months for surgery as the waiting list is so long even if they suspect something sinister. 
    I cannot wait to get this mass out. 
    have you had bloods? When are you likely to find out? When is your pet scan? Why not MRI? I wonder if it won’t be until after the surgery and the my test the mass that you will know? Sorry for all the questions, I do wonder why we have some differences in our care when it’s similar stories. 
    hope you are doing ok. I think myself and Jembers are both still in the waiting game. The amount of public holidays and weekends seems crazy at the moment, usually I would enjoy that, now I just feel like the waiting is endless! 
    good luck for your surgery and getting some answers. 

  • They tend not to give PET scans to people who haven't had a definite diagnosis of cancer I think because it's avoidable radiation. It's not normally a diagnostic tool per se but more to decide treatment management. It doesn't mean jeh's cancer has spread but will be more informative for treatment plans if it has. There's so many variables in what decisions they make that it's really individual. I sat a metre and a half from my partner during some of his PET scans because it's so radioactive I had a geiger counter on me. One isn't a huge issue but it's like having too many X rays at once. They'd rather you not.

    I'm sorry you've had cancer and are in this boat Jeh. I hope it's just a nuisance cyst.

  • My timeline is just a bit weird as I had the CT already before even speaking with a gynae consultant! My previous history (2013 stage one cervical cancer) has meant they've moved fast as they can't tell if it's an ovarian cyst or a recurrence. So I'm a bit different to you both there. They want to get it out quickly so they can biopsy it and decided to run the PET scan concurrently rather than he me have surgery, wait weeks for results then wait for a scan date if it is a recurrence. The PET scan will hopefully be in place before the surgery so if it does show active cancer they can just biopsy the cyst to determine treatment. All a bit of a random order but I'm just going along with it .

  • Thank you! I'm hoping for a really weird cyst with teeth and hair and nails haha. And if it is cancer, then I can always be thankful my gallstone picked it up as I have had zero symptoms!!

    I've had bloods done and my ca-125 was 17 but the consultant said it's a terrible test so don't read too much into it either way.

  • And sorry I missed answering this one - I don't know when the PET scan is yet but it needs to happen in the next week so be in place before surgery.

    When I had my original cancer in 2013 I had an ultrasound and an MRI but no PET scan so it's a first for me.

    Being back in the waiting game with scanxiety ain't much fun after ten years though!

  • It's only when there's been a primary cancer and they're worried about recurrence or metastases. Tbh, the time gap seems unlikely to me but I'm glad they're being cautious because if they see anything on it they can give you good treatment options asap. Scanxiety is the pits. I also imagine the fact PET scans were traditionally more expensive than MRI factors in how they handle them. Plus you got to stay away from pregnant women and young kids for 5 hours after it. They take time for the radioisotope to get through your system so you're sitting for an hour before the scan is even started.

    My partner will be receiving them regularly even though his cancer seems to be under control just now because you can never be too careful with metastatic cancer. Trying to be cautiously hopeful about his future but he was diagnosed with stage 4 two years ago with no hope of cure but the pet scans show nothing active just now. It's really hard to process. Brains are totally not built to understand cancer intuitively in any sense. It's just too much to comprehend properly. I wish we could just conquer it for everyone.

  • These pesky ovarian cysts are a nightmare aren't they! Fingers crossed for all of us that they'll just be something that needs taking out and that will be it. I'm still waiting for results and this whole situation has consumed every minute of every day since I found out about it. I've had no symptoms, although now I know about it, I keep getting little aches and twinges that are probably psychological. My blood test was elevated which makes me even more worried and I'm constantly trying to tell myself that it doesn't necessarily mean anything sinister, but it's so hard not to think the worst. I imagine that given your circumstances, your concern is high. It's good to hear though that these things are taking seriously and the NHS will sweep in a get things organised in a timely manner to keep people safe. X

  • Thank you for answering all my endless questions, I’m a first timer here and so interested in people’s stories. I am so glad for you that everything is moving so quickly. It seems you will have answers pretty soon. Is it minor surgery you will need to get it out? Outpatient? 
    hope it goes smoothly, keep in touch when you know more and good luck for your scans x 

  • I had no idea PET scans had so much radiation. I am sorry to read about your partner, I didn’t realise as we had only previously discussed your own story. I’m glad you still visit this site, you are a wealth of knowledge here. What cancer was he diagnosed with? Thank you for all your answers, I have really appreciated the time you take to reply x 

  • Hello Jembers, still waiting results over here too. Doesn’t it feel like forever ago all this started? And it’s only a few weeks. Were you given any idea when you are likely to hear anything? The gynae secretary told me I was welcome to call on Friday 3rd and see if my scans had been looked at yet. She told me there were 3 pathways I could be allocated to:

    1 - cancer (app within 4 weeks)

    2 - needs further investigation, possible cancer (app within 3 months)

    3 - urgent but benign (app within 12 months) 

    4 - routine (app within 18 months) 

    I won’t know until they have reviewed but I can’t believe how long it will be either way!