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.

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  • Hello jembers, I wrote on your first post as I also have an incidental mass very similar. 
    when I had my CA125 test I was told it is very likely for a raised amount even if only a cyst as it can signal other things like pelvic inflammatory. The levels can be in their hundreds just on a period so actually the fact that you went to the docs with some post menopause bleeding might actual explain the higher level.

    when is your MRI? I am also awaiting mine, I had to have further bloods taken on wed and awaiting my MRI now. 2-4 weeks. 
    more waiting…..

    keeping everything crossed for us! 

  • Hi cloudy1986, thanks so much for checking in with me, it means a lot. I've been given an appointment for 23rd December (Merry Christmas!!) I'm clearly on an urgent 2 week wait due to the nature of my cyst, my age and my blood test results. It's very hard not to fear the worst. I'm trying to remind myself that my situation could be completely benign, but due to my terrible habit of googling, I've convinced myself that it's something terrible! I am genuinely sending as many positive thoughts to both of us as I possibly can. X

  • Thank you, Jembers, I'm trying not to be anxious and just wait on knowing more. My partner, I'm worried about hugely, but he's being so hurtful and I don't know how much rejection he can reasonably expect me to take. He doesn't know I'm on the cancer pathway because I don't think it's pertinent at this point while he's waiting on his own process. But it means I'm getting negative support when every time I eat or drink I'm having a coughing fit. If it is anxiety causing it he'd take it as the worst kind of attention seeking rather than as my body protesting at the strain. I sympathise because he has a diagnosis that marks his longevity but sometimes I think to myself that it's unfair that he treats my life as infinite and therefore the quality of it should be far less important. He gets really nasty.

    I dunno, if I get a result from the gastroscopy that is alarming I don't know what I'll do. I've done a Dr Google and my symptoms aren't good but I've checked loads of more minor conditions that can mimic it but I see why the doctor wants to rule out oesophageal cancer. It's just rubbish when you can't confide in the person who is supposed to look out for you. Worst thing is he has a female friend he's fawning over because she might have melanoma too. I don't know how much I can take from him. If I told him that *I* am on the cancer pathway he'd tell me I'm wasting NHS resources and am a hypochondriac who blows everything out of proportion. When I was offered the hysterectomy and thought I might have ovarian cancer he didn't support me emotionally at all. He still brings it up as an example of me over reacting.

    Sorry to pour it all out but I need somewhere to.

  • Hey, it's absolutely ok to pour it all out and I really feel for you. He's clearly incredibly angry about his cancer (understandable!) and everyone else who hasn't got it is just pathetic and irrelevant! Obviously, his thought processes are completely bent out of shape right now and he's punishing the one person who he actually needs to love and support him. I would imagine that living with someone who has cancer could make you a lot more aware of yourself and cause you to react to symptoms with greater concern than you usually would. However, you've had real, legitimate cancer scares in the past, as have I, and the NHS is constantly telling people to go to their GP to get things checked out. Every other advert on the TV is asking you if you've had a cough for longer than 3 weeks of blood in your poo!!! So, for him to dismiss you and tell you you're being dramatic and wasting resources is unacceptable, misguided and cruel! As far as the female friend is concerned, it sounds as though by focussing on her, it's taking his mind off his own problem. I think you need to have a chat with someone who's dealing with his treatment and tell them how angry he is and how he's behaving towards you. I reckon it's probably a really common scenario and they might be able to have a talk to him about how he's feeling and make him recognise what he's doing and how to think about things in a more rational way. Come and talk whenever you want. This site is a great outlet. I'm frankly amazed at the length of this thread I started, but I'm glad I posted here. XX

  • I really feel for you in this post, your partner obviously has support in his mum and this other friend, do you have a support network for you? I think jembers is right, you could both reach out to macmillan for support, I bet they deal with angry cancer patients and their struggling partners all the time. 
    you cannot pour from an empty cup, so please take time for yourself too. He sounds resentful and to be taking it out of you, can you tell him how you feel? I feel sad for you that he hasn’t been supportive and would think you are wasting NHS time, that is not ok. Your partner is obviously not someone you can lean on just now so make sure you have other people around to help lighten the load. 
    could you speak to his mum?x 

  • I've spoken to his mum but I feel guilty as she gets angry with him and though she's discreet he hates it when I talk to her. Thinks I don't discuss things in a balanced way. I dunno, it's horrible what he's going through. I'm a bit isolated otherwise as I don't want to moan about him to everyone we know.

  • definitely - just want it gone now - I have a CT and a heart scan on Thursday and then its back to MDT to get a date planned - its just a huge worry x

  • You poor thing. The waiting is awful. I hope they book you in ASAP.

  • I think its men - they cant always deal with things as we do so they lash out and hurt those closest to them - I am not being sexist but we are the nurturers and they are the cave men - sometimes it helps to just give them space  - he needs to process it also and with you unwell it just adds to his mental stress - I used to work for an author who wrote all the books about men and women and why they are different xx

  • waiting for test results now - then back to MDT for hopefully a date x

  • I got a surprise phone call from a gastroenterologist asking for more details so I've got a CT scan on Saturday which is a bit of a shock. Things are calmer with my partner relationship wise but our heads are busting with health concerns. I'm struggling to eat without coughing and gagging now. It's really weird.

  • That’s great news on the CT scan, hopefully things are moving forward for you also … try not to worry x

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  • I have been given a gastroscopy appointment on Friday. I think they can tell me things during the procedure so hopefully know a bit better what's going on then. Hope you're coping x

  • That’s great news, at least your are moving fwd… i hope the MDT discuss me Thursday so I might also joke the plan… it’s the waiting x

  • Keeping everything crossed for you that you are discussed. Did you get a surgery date yet?x

  • They will be able to tell you what they see on the day. They may take biopsies so might not have all the answers. Will follow up with a letter too as the sedation can make you forgetful. Good luck x 

  • No hopefully after MDT on Thursday x

  • How's it going? Just a little update, I had my follow-up appointment this morning. They are not concerned about my cyst in anyway and I was given three options of how to deal with it. One was just to watch and wait, two was to remove the cyst, and three was to remove the cyst and both my ovaries and fallopian tubes. I'd always assumed that because I've already gone through the menopause, they'd automatically do the third option. I suppose it was quite comforting to know that I could just leave it alone if I wanted to. Anyway, I've chosen to have the cyst and ovaries etc. removed. I just thought it was the safest option and will give me the greatest peace of mind for the future. It will be done via keyhole surgery, but absolutely no idea when. Hopefully I can book a holiday without suddenly getting called in! Let me know how you're all getting on. I know everyone has got stuff going on at the moment and I'm hoping you'll all get some positive feedback very soon. X

  • That’s great news on mine I asked if they would do a hysterectomy and she said for any cyst removal they would do automatically… tbh I would rather them gone than any chance of anything sinister appearing! 

    i ended up in A & E earlier, thought my clots were back but they think it’s just grown again so causing more problems!

    oh well what a pair we are x

  • I've got the gastroscopy tomorrow afternoon so will finally get some feedback about what's going on.

    I was 39 when I had my cysts removed and menopause can trigger manic episodes in those afflicted but if I had been a smidgen older and without bipolar I'd have had it all out too. My mum had endometrial cancer so I kinda think reproductive organs once they've had their use are a bit of a liability.

    Good luck everyone with their appointments etc.

  • Oh I was thinking of you today. Glad to hear they are not af all concerned and just waiting on getting your surgery now. You will probs get a pre op letter at some point to give you a better idea. Although I thought since I’d had my pre op I was getting closer but I was speaking to someone who has had 3 pre ops! So maybe not! 
    I would have gone for the same choice as you. Just get it all out and have that security for the future. Although as I’m not 40 yet or through the menopause, I am hoping to hang on to whatever they can for now. 
    my cyst is causing me bother, sometimes I get this horrible pressure pain that lasts for days, when I do kegels it’s so sore internally. I cannot wait to just get this surgery and move on from this chapter x 

  • Sorry to hear you have ended up in a&e. Are you sore? Were you discussed at MDT today?x