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.

Parents
  • 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

  • My mum's in Scotland and her endometrial cancer took months for her hysterectomy then there's been no decent follow up. They need targets like in England but I've found that there's more medically trained professionals here as I'm an hour away from London so I think it makes things run smoother when you can attract the personnel.

  • "wee hairy gremlin," makes it sound like they could sprout legs and run away. And I had two of them!

    I miss Scotland. Down here new people either talk to me about whiskey or deep fried mars bars. I'm not partial to the former and the latter I've never tasted  

  • Aren’t they. I even thought someone telling me I had 100% cancer, then having to wait a month to see someone seems just such a long time. All of those timescales are just so long. I will be so anxious to be on any of them with that time frame! 
    yes I’m in Scotland, and hopeful to hear something on Friday too. Really hoping this is our last week in the dark. It’s been a long wait to get this far. 
    the secretary also told me it could be a phone call, a letter or a request to contact my GP for results. My anxiety was through the roof not knowing how I’ll hear or what that meant so she said I could call on Friday next week for an update so it was a little more in my hands. I still don’t think she will tell me much over the phone, either it’s been looked at or has not. 
    im still anxious, just desperate for this bit of waiting to be over. I don’t want to be told it’s something sinister of course, but I certainly feel this not knowing and having no control or plan is awful too. I wonder if in some months I will look back and wish to be back where I am now with not knowing for certain! X 

  • Agreed that’s the NHS care in Scotland seems a little more lacking than in the big cities down south. I feel jealous we don’t have a login to view our NHS letters etc. I have looked into going private, I actually made an appointment in a panic but then received a phone call to go for an MRI on the NhS a few days before. I don’t have the funds to spare, however if someone tells me I’ve to wait months then I’ll find them! 
    my gremlin analogy comes from stupidly googling pictures of a dermoid, what horrid things they are. 
    I also hate whiskey, but I do love a fried mars bar! 

  • If the timescale seems to stretch out before you kick up a fuss. My mum was too passive believing in the power of prayer and the wisdom of doctors. She's okay though but it was only 2.5 years ago so I nag her all the time to keep an eye on things and chase the doctor.

    There's a different culture here with the NHS. The docs are more cautious and the service users are more plaintive. Well, I've been down here a long time so I don't really know if the culture has changed much in Scotland but the stories friends and family tell me make me think it's not changed enough. Still very medically paternal.

  • Have you had any word or updates since your MRI? Just checking in! I called yesterday, no one has looked at my updated MRI yet. To call back in a week. She said they would write out when have result but I’m too impatient as my last call I received the letter 3 weeks later so I’d rather keep calling. Hope you are ok. This waiting is very draining! 

  • Hi there. Nothing yet! I had assumed 1 to 2 weeks and on Monday it will be exactly 2 weeks. I've been checking my emails constantly and jumping every time my phone rings. It says on previous correspondence that they will write to me with the results, but I'm not sure whether that's how I'll hear back from them or not. It's exhausting and scary not knowing what's going on. How have you been feeling? I have good days and bad days. I've been reasonably calm the last couple of days, but have episodes where I'm literally shaky and feel sick. I've been lucky that my husband has been at home for the whole of Christmas, but he's back at work on Monday and it will just be me and the dog again! I keep trying to remind myself that apart from my mental state right now, I do not feel physically unwell. I still have no symptoms, I was oblivious to the existence of this cyst before I had my scan and I'm just going through the same process as everyone else in the same situation as me. At first I was terrified by the fact I'd been sent for an MRI, but from reading other people's posts, it seems they have had them too. I'm still concerned about my raised CA125, but again, it's not sky high and it's often raised in situations like this. I'm just trying to keep my head together as best I can. I hope you are too. X

  • Oh do let me know when you hear something. I am worried my letter will say something like come in for an appointment in a month or something with no answers. This waiting game has been endless. 
    I am mostly ok and calm, I also go back to work on Monday so I am a little anxious about that. Mostly getting a call whilst I’m in work, hence why I keep calling them. 
    I feel like I have recently put two and two together and come up with 100. I’ve had so many symptoms for a long time and now pinning them all on this cyst. Probably nothing to do with it but the cyst is now getting the blame for the sore back and GI problems etc! Hoping one operation sorts my whole life. Haha. I have to go for an endoscopy for my GI issues on the 20th and I am dreading that bit too. Stomach and ovarian cysts can be related but because they are not right next to each other have have said to still go. But then so can cancers so that sends me in a spiral too. 
    I had bloods taken again before my MRI but haven’t asked about my updated ca125. I feel to anxious to know! 
    hopefully your dog is good company and keep you out on walks etc to keep your mind off things while we wait! 

  • Hey, how you getting on? I'm still waiting for results and trying not to have a nervous breakdown! Twice this week (Monday and today) I've had emails saying I have new test results to view on the patient portal and when I've looked, it's been the same information I've already had at the beginning of December!! My heart was literally pounding out of my chest and I couldn't stop my hands from shaking. It's really wearing me down and I just feel like hibernating at the moment, especially with this horrible freezing weather. I'm beginning to wonder if I should ring them, although surely they would have contacted me by now if they have the information. I keep swinging between thinking it's something bad and telling myself I'll probably be fine. I'm full of aches and pains that didn't exist before I knew I had this problem and I keep thinking it's because my cyst is growing and getting worse!! How have you been feeling and coping with things? X

  • Hello, how funny I have just come on to write to you! I called last Friday and I called this morning, my New Year’s resolution was to be my biggest advocate for my own health so I’ve just decided to ring and apologise later if I’m annoying anyone :) 

    The gynae secretary today told me there is a letter for me and it’s been posted out and also sent to my GP. Thankfully I already had a GP at 3pm tomorrow so I think I am going to find something out tomorrow. She wouldn’t/couldn’t say anything over the phone other than it would come by letter. I am so glad I have that pre-booked appointment. On one hand I am so glad it’s been fast…and on the other. 
    I don’t know how I feel, I’m all over the place. 
    I have some other health issues with my stomach and on good days I feel like it’s unrelated and gallbladder or ulcer issues (being investigated separately) and on bad days I think I’ve got cancer and it’s spread. 
    My son has a snow day so that’s keeping me from just crawling under a blanket but also so glad to have been working at home when I got the call!

    I will keep you posted tomorrow when I’ve been in x

Reply
  • Hello, how funny I have just come on to write to you! I called last Friday and I called this morning, my New Year’s resolution was to be my biggest advocate for my own health so I’ve just decided to ring and apologise later if I’m annoying anyone :) 

    The gynae secretary today told me there is a letter for me and it’s been posted out and also sent to my GP. Thankfully I already had a GP at 3pm tomorrow so I think I am going to find something out tomorrow. She wouldn’t/couldn’t say anything over the phone other than it would come by letter. I am so glad I have that pre-booked appointment. On one hand I am so glad it’s been fast…and on the other. 
    I don’t know how I feel, I’m all over the place. 
    I have some other health issues with my stomach and on good days I feel like it’s unrelated and gallbladder or ulcer issues (being investigated separately) and on bad days I think I’ve got cancer and it’s spread. 
    My son has a snow day so that’s keeping me from just crawling under a blanket but also so glad to have been working at home when I got the call!

    I will keep you posted tomorrow when I’ve been in x

Children
  • That's great that you'll hopefully be able to discuss something with your GP tomorrow. I'm sorry you've got other things going on at the same time and I can easily imagine that your mind will play tricks on you and lead you to think it's all connected. Most likely it's not! I'm also in this hideous no man's land where I'm sick of waiting but also terrified of finding out, just in case it's bad news. I have to keep reminding myself that all I can do is let them do their job and whatever it is will get sorted out. Easier said than done! I'll speak to you very soon. Take care X

  • I just wanted to update and let you know that I have no news. My letter had not made it to my GP nor myself since the gynaecology secretary called me yesterday. Still in limbo! X 

  • Hi cloudy, sorry to hear you're still in limbo. I suddenly received an update today at about 5pm this afternoon while I was out with my family. It seems that my cyst is a dermoid with nothing much of concern on MRI findings, but will require surgery which I already knew would be the case. It does have some atypical features, but I have been stepped down from the cancer pathway and I'm now waiting for further appointments to discuss treatment.

  • Aw that is the absolute best news! I am so happy for you. No concern. How are you feeling? Being stepped down must be such a relief. Your family must be so relieved too. Whisk surgery isn’t ideal, it’s actually so nice to know it’s nothing sinister. 

  • Thanks so much. I am feeling much calmer now, but don't think I'll truly relax until it's out and they've had a look at it. However, reading that I have been stepped down from the cancer pathway was a massive relief and a good sign that they are pretty confident that what they're dealing with is benign. I'm hoping that it will just be surgery to remove the ovaries and not a full blown hysterectomy, but obviously that will be explained at my clinic appointment. Just wondering now how long everything will take to get done. I'm sure you'll get your results very soon and find yourself in a very similar situation to me. The fact that they've told you they suspect a dermoid cyst would suggest it probably is and the further tests are just to break it all down and get the clearest picture of it that they can possibly can before removing it. Keep me posted. X

  • Hey cloudy, just wondering how you're getting on and if you're any further forward? I know you were told that a letter had been sent out, and you've understandably been desperate for news. Having had some of the weight lifted from my shoulders, I appreciate how frustrating it must have been that your results had still not arrived, and I've been thinking about it ever since. I've no idea when I'll get my next appointment through, let alone how long it will take to get the actual surgery. It sound a bit crazy, but I keep a copy of the letter with me so that when I have a nervous wobble, I can read it again for some reassurance. I'm still aware that they will need to biopsy the cyst once it's out to be certain there's nothing iffy inside it, but reading that I have been stepped down from the cancer pathway keeps me feeling more positive. X

  • Hello! Oh having the letter available makes total sense to me. I think we will have these wobbles from time to time. I still have not had my letter through. I can’t believe I still don’t have it. I have a GP app tomorrow and I am hoping she has a copy to give me. 
    I called the gynae secretary today and I did however get some good news! She said I had been stepped down to a “routine non urgent” pathway, I asked lots of questions but all she could say it’s likely benign and they are not concerned…I am so happy but I still Don’t know what it is now. I’ll keep in touch if I get answers tomorrow. Heard all good news, but I want it on paper and to know what happens next! 
    did you get a measurement of your dermoid? Does your letter just say you will get an appointment in due course? The routine pathway I was told 18 months on a previous call. I cannot imagine! 
    j am overjoyed that it looks benign for both of us :) x 

  • I'm really glad for both of you. That's great news  

  • (I hope it's not 18 months though )

  • That's great news. It sounds as though our results have been very similar. They measured it on the MRI at 7.5 x 4.6 cm which is slightly smaller than it said on the ultrasound. At the bottom of the letter under "Follow-up Plan" it says - You have been stepped down from the cancer pathway. You will have a follow up in the clinic to discuss management. No idea when that will be. 18 months sounds crazy though!! X