Hi Im having tests for ovarian cancer at moment ca125 is high. can anyone tell me their early symptoms and pre diagnosis ?

Most my symptoms have been urinary and what was thought to be infections but now have pelvic pain and had some bloating too. I suffer from IBS and indigestion for 10 years or more anyway Gp found area she said had a "feeling of fullness" to it on an internal. Im freaked out by it all

17 Replies

  • Hi ...Just to welcome you to our community, sorry you are having problems but at least you are being investigated, it is hard not to worry while tests are going on. If you go on the Ovacome website you can look at the BEAT symptoms for ovarian cancer on there, but everyone is different and some of the symptoms for OC are similar to other conditions.

    Sending you best wishes love x G x

  • thankyou x

  • Hi!

    I'm sorry you're having this worry at the moment. It's the worst time, the worrying and the waiting. You've come to the right place to get support, though. If you look at our parent site ovacome.org.uk you will se on the left 'BEAT ovarian cancer with Ovacome' it gives lots of info on signs and symptoms and a tracker for you to record them. You can then print out your symptoms and take it along to your next appointment. A raised CA125 isn't necessarily a sign of ovarian cancer, but it can be. If there are any reasons to suspect you have OC, you should be sent to a hospital for an ultrasound scan, then a trans-vaginal scan (very non-scary, just a probe up inside) then, if anything looks suspicious, an appointment with a Gynaecologist. It may not come to that though. There are many causes of bloating, of which IBS is one, as you will know. Have a look on the Ovacome site. There are also details of a nurse-staffed helpline email and phone number there too, which you may like to use. There are lots of fact sheets under the resources tab, so you will be able to find out more info.

    I know it's easy to say, but don't freak out too much. It sounds as if your GP is well up on keeping an eye on things if he's already sent you for a CA125 and the key to successful treatment is early diagnosis, if it is OC.

    All the best to you

    Love Wendy xx

  • thankyou for your answer

    Nikki xxx

  • Hi

    I also had 'urinary infections' and was backwards and forwards to my doctors for 6 months. He just kept giving me antibiotics. which did no good. I started to get mild pelvic pain so went to see a female doctor at the surgery. She immediately examined me and booked me in for a transvaginal scan at the surgery (fortunately they have there own). The doctor who did it thought he saw something on my ovary so did a ca125. That was Friday, on Monday he rang me to say the test had come back high, I saw a Gynae surgeon on the Thursday and the rest is history. Like you I suffer from IBS which masks so many things. My mum died of ovarian cancer 10 years ago and I have belonged to Ovacome since then and have always tried to be aware of the symptoms, but didn't realise bladder problems were a symptom.

    I hope for your sake this is something totally different, but if not you have caught it soon.

    I know how terrified you feel, we've all been there.

    Please keep us posted and take care.

    Love Linda xxx

  • Thankyou for all your replies. My Gp was fairly certain she found a mass on my vaginal wall and now ca 125 is 51 so my ultrasound is booked for monday and gynae consultant on thurs morning. I still have pain in my left groin which isnt going away but the big blown up tummy has gone down now and I do feel better than I did. The pain started as a spasm inside my vagina (in the spot she found the mass) and was agony but thats stopped now. My urine symptoms, frequency, urgency, dribbling come and go and so do my bloating. Not sure if the persistant bloating with OC is like that?? mines far worse in a evening whenive eaten which is why I always thought it was my IBS which Ive had for 20 years , though I always had diarrhoea with it and I dont get that at all which I suppose classes as a change in bowel habit. Fingers crossed its not but thanks for your support ladies

  • My wife had no symptoms until she could feel a lump in her right groin. Doc thought it to be an hernia and she was sent to see a specialist who confirmed it to be one. It was only when he was performing a repair 2 weeks later he discovered it to be a tumour which he successfully removed. The biopsy results 2 weeks later confirmed it was stage 3c OC. Before chemo started her CA 125 was 108.

  • Thanks for your reply, it seems like everyones symptoms vary so much. Love to you and your wife

    Nikki x

  • I have two complex cyst that are 12in each I was set to have surgery Monday but my ca125 came back at 108 so my gynecologist is making me go to a specialist in Fort Worth my sonogram also came back with suspicious spots I am now extremely scared. "How I your wife doing

  • Hi Nikki! So glad it all seems to be in the stages of investigation you need. Good luck with all the appointments, do let us know how it's going. If the bloating comes and goes though, it's a good sign....although maybe not if you're going through it ;-) if you want to talk, the helpline is on 0845 371 0554. Ruth is lovely. Good luck

    Love W xx

  • Nothing to add to the sound advice above just wanted to wish you all the good luck in the world - will be thinking of you over the next week. Big hugs Amanda

  • Hi Bessiex... it's good that your GP conducted some tests and referred you. The first thing I would say is that, with hightened awareness, GPS are going to refer more people and some of those people will have the disease. The downside of this is that some people who don't have cancer will think they have it when they don't, but if this saves lives, it has to be a right course to take. I really hope that you are one of the many people who don't and it's likely that you are. It's easy for me to say not to worry because I know it's a scary time for you. Good wishes are sent your way for a proper diagnosis and a full recovery. x

  • Hi TinaB

    Thanks for replying, I agree I do seem to have found a GP who is really on the ball and seem to be lucky in that I have been referred so quickly. have had a terrible day today with pelvic pain and was debating whether to go A and E when it then seemed to get a bit better. counting the days to my scan and appt and sending my best wishes to all you fantastic ladies. You are an inspiration and support and I am thinking of you all

    love Nikki xxx

  • Hi Nikki, I was in exactly the same position as you just a couple of weeks ago. I had persistent bloating, but it did seem to vary during the day. I had bladder problems, discomfort in the groin area, sometimes i have problems swallowing, and so it goes on. I had a ca125 test and it came back as 83. I was beside myself with worry. I had an ultrasound scan and vaginal scan. I have a fibroid on my uterus, and what with my endometriosis, the Consultant was not at all concerned, and suggested no further investigation. This is not to say I am going to stop keeping an eye on things, but it was not the result I and so many other people dread! Good luck and let us know how you get on! Love Janx

  • Thanks Jan I had my ultrasound yesterday and thankfully didnt find anything wrong apart from a bit of fluid. Got gynae appt thurs love Nikki

  • How did your appointment go today Nikky? Love Janx

  • When I first went to my GP I had all the classic symptoms. My tummy was distended from being filled with fluid called ascities, which made me feel really poorly. I felt much happier when they drained that off.

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