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

  • Oh god don’t say that… after my sisters 3 month delay it’s been my worst nitemare! And dr says he will take a pic … bet that’s one u don’t wish to see x

  • I'm losing weight (which was needed but not this way.) It is still unpleasant to having food that sticks. The gastroenterologist sent my GP a bit of a weird letter and copied me in. It seemed really derisive so I'm annoyed at him. It didn't mention that I am losing weight fast or how to tackle it. It talked about lymph nodes and referring me to ENT but in a sarcastic seemingly way. I might be reading too much into it but I haven't heard from the GP or anyone since my gastroscopy apart from the weird letter that wasn't to me, just cc'd in. Partner is still waiting for results.

    Thanks for asking after me. I wish everyone better health and good medical care plus faster appointments! Wish everyone wasn't left waiting so long.

    (I really can't follow how this is threaded on my mobile, I'm not sure if the forums are easier to read on a pc or not.)

  • Pre op today! How did you get on? 
    I got my operation date today, it’s July 9th. Just trying to figure that all out being summer holidays and having a 10 year old. 
    thankfully we go on holiday 21st June so I will still get to go! 

  • How did your appointment go yesterday? All still planned for the end of the month? Hopefully all ok and on the countdown now x 

  • I use an iPhone and it seems to look ok for me, just one big thread from earliest to most recent messages. 
    What a shame you feel your letter had an undertone to it, what are you being referred for now? The same thing? 
    hope you are ok. When is your partner due results? 

  • Hey, that's brilliant news! Everything was fine and I've been declared fit for surgery. She told me it will probably be within the next couple of months hopefully, so fingers crossed. I think recovery time for laparoscopy is fairly short, so maybe 7 to 14 days of taking it easy, but in the meantime staying mobile. Can't wait to get it all out the way and think about something else for a change! X

  • Just been cancelled! Oh well let’s see how long a new date takes x

  • Noooo. Why was it cancelled? 

  • Oh that’s brilliant news. What a stressful time it’s been. Can’t believe it won’t be long until a year has passed since we started with all this!x 

  • Dear lovely members, I wanted to thank you all for sharing your stories, you are all truly inspirational.  You are helping me so much through my own journey. It's almost 2 years since I had surgery for breast cancer, I'm 53 and I've been told I've gone through the menopause. I haven't had a period for 18 months but three weeks ago I  started with bleeding.  I was referred to the consultant and I've been told I have got a large growth on my ovary. Such a shock,  I've got my MRI on Thursday, how long has it taken in general for results to come back from MRII? I am staying positive and always manage to make it through in the daytime but nights are shocking, wake up and mind is going at 100 miles an hour. Sorry for any typos not wearing my glasses xx

Reply
  • Dear lovely members, I wanted to thank you all for sharing your stories, you are all truly inspirational.  You are helping me so much through my own journey. It's almost 2 years since I had surgery for breast cancer, I'm 53 and I've been told I've gone through the menopause. I haven't had a period for 18 months but three weeks ago I  started with bleeding.  I was referred to the consultant and I've been told I have got a large growth on my ovary. Such a shock,  I've got my MRI on Thursday, how long has it taken in general for results to come back from MRII? I am staying positive and always manage to make it through in the daytime but nights are shocking, wake up and mind is going at 100 miles an hour. Sorry for any typos not wearing my glasses xx

Children
  • Hi kitty,

    sorry to read you are in this horrible waiting limbo. I had an MRI unrelated in October and they called me approx a month later to say a mass was there. I then waited for an MRI with contrast which I got on Xmas eve. I had results about 3 weeks later. Unsure if there was a delay because of festivities or quicker as not so many routine appointments over the festive time. It felt like forever, I know that feeling you are having an sympathise. 
    are you having any bloods taken to check your ca125 levels? I think that can sometimes (not always) help the gynaecologist build a bigger picture. 
    good luck, fingers crossed you join us who are lucky enough to just have a horrible cyst. 
    mine is due out in 3 weeks.x 

  • Hi Kitty14, Sorry you're going through the horrible unknown stage. I had my MRI on 23rd December and I got my results on 9th January. It felt like the longest wait ever, and maybe it would have been quicker if it hadn't been Christmas, but who knows? Hope you don't have to wait too long. X

  • Hi Cloudy, 

    I wish you all the very best with your surgery and a steady recovery.

    Thanks for sharing the information on how long your scans took. The waiting is do hard but I know from my breast cancer diagnosis everything started to happen so quickly it didn't give my brain enough time to process everything I was being told. I'm hoping it's a horrible cyst to. Blood results were normal so that is a positive. 

    Thanks again for your support xx

  • Thank you for sharing Jembers, I've never been so attached to my phone, I'm terrible for putting things down and forgetting where I have put them. I've been walking around with a little across the body bag, I must look very strange. X

  • My partner's biopsies and pet scan have just come back clear and he's stage 4 melanoma. There's hope even after a previous diagnosis that it won't be metastases or a secondary cancer. These dermoids seem quite common so I've got everything crossed you've got one of these gremlins and nothing untoward.

  • I am so sorry to hear that, hoping for the best news about his treatment and that you are ok also? Hugs x

  • Hi Lyn,

    Thank you for your kind words,  you sum it up really well, always have hope. I'm glad your partners results have come back clear. Strong positive hugs to you all and thank you for reaching out and making me feel so welcome.  X

  • How are you feeling about everything? Hopefully things have settled around the house a bit with clear results? Is the melanoma being treated?x 

  • Thanks for asking. I'm so relieved that he's out of the woods. He's had two years of immunotherapy and it's holding the melanoma at bay. Given his health has improved I feel more free to think beyond the relationship tbh. He's really hurt me emotionally and doesn't value me so I'm considering walking away.

  • Hi, he's actually in a good place health wise atm. His stage 4 diagnosis is a couple of years old now and he's responded to treatment. I wasn't clear in my response. It was good news. A clear PET scan means there's no active cancer sizable enough to show