Scared Ovarian Diagnosis

Hi, I'm new here and petrified. I haven't had a cancer diagnosis yet so you may think I shouldn't be hear but I'm petrified. I've had bloating for about 4 weeks and after routing blood test an elevated CA125 of over 300. I'm so swollen round my middle and now think it could be ascites not bloating and I feel so stupid and worried that might be a sign I have more advanced cancer. I've got an appt on Monday morning with a gynaecologist. I have a 5 year old and can't even think about what this may mean. Anyone who has been through this or has any advice welcome. Thank you x

  • Hi-I have also just recently been told the devastating news after my blood results came back as high.. I had an mri/ ct scan pretty much straight away where they found a tumour on my left ovary also bowel and adrenal problems.. I'm so sorry.. please don't worry.. I know it's very difficult... and scary... I'm here if you need to chat..xx

  • Hi, 

    What a worrying time for you, especially being a Mum to a little one.

    Your CA125 does seem high, but it can sometimes be due to inflammation not caused by cancer in pre-menopausal women (e.g. endometriosis, ovarian cysts etc.)

    It's good that you are going to get thoroughly checked out by gynae though, and at least Monday isn't too long to wait (though I'm sure it doesn't feel that way!)

    Keeping everything crossed for you. Let us know how you get on if you can x

  • Really sorry to hear of your recent diagnosis, but glad that you got diagnosed so quickly after your initial high blood result. It must be a really scary time for you right now.

    Hoping your treatment goes well xx

  • I saw the consultant yesterday who asked for urgent CT and MRI scan. I am beyond petrified as I keep reading about ascites (I have a swollen tummy and she said she could see fluid around the pelvis). Did you have the swelling? What are your next steps. I've got a two week wait for results and not sure how I will get through it. I'm not sleeping, crying, worrying about other symptoms I seem to have developed. If it was only the high reading I think I would be less concerned but I'm worried the ascites is a sign I have advanced cancer.

  • Hi- regards to your ct and mri scan, I think that's just the pathway they follow.... it's agonising waiting around to get these tests done... I didn't have any swelling,just a little bloated at times, my periods became a bit erratic so I was due a smear and just happened to mention this to the doctor who gave me a ca125 blood test which came back at 65... I had an ultrasound which found a 6cmx 3cm tumour on my left ovary... which was a bit of a shock.. had my mri and ct within a week... they found nothing on my ct but did pick up an area of concern in my bowel.. then told me over the phone also adrenal.... I have days where I can't believe this is happening to me.. then days where I'm really positive.. my next step is to have a ct colonoscopy then a full hysterectomy.. chemotherapy... I can't even begin to say don't worry... that much goes through your mind... I'm just of the mindset at the moment that worrying will not alleviate the situation... just go with everything they tell you... my children are much much older than yours but I also worry about them as you are with your little one.... I'm always here for a chat... try to keep positive.. big hugs to you my love xxx.    Can I also just add... I know my levels are lower than yours but as the lady said above it could be down to other conditions... remember that xx

  • I'm so glad I found this post.  I'm six years post menopause and experienced bleeding just over a year ago. Diagnosis showed intrauterine polyps which were removed and tested negative for cancer. Two weeks ago I had a small bleed again and spoke to my GP who seemed reluctant to refer me as it was only one episode.  I did push for a referral and was seen at the hospital yesterday. Another polyp was removed and sent for biopsy, but the scan also showed and enlarged ovary.  Bloods were taken and sent for urgent tests. I know that there is nothing to do now but wait. I'm just wondering what questions I should be prepared to ask if the results come back with raised levels.  Any advice would be great fully received.  We all seem to be at a similar point in this journey. Let's hope we can help each other through this.  Good luck xx

  • Hi- have you been given a ca125 blood test?... I would ask for one.... it's not always an indication of anything serious as explained above in another post .. I'd wait for your blood results and go from there... it appears you've been persistent with your doctor to be referred which is great...I'm hopeful all is ok for you. If the results come back as raised they will usually send you for a ct and mri scan, they are pretty quick at getting these sorted.. xx

  • Hi Des,  yes, they took blood yesterday for urgent processing. The practitioner who performed the ultrasound said that, looking at the images, she would refer me to the MDT straight away, but they only meet once a week on a Tuesday afternoon and the test wouldn't be done in time. She apologised that I would have a bit of a wait to hear back from them.  She didn't seem to have any doubt that the referral would be forthcoming.

  • Hi-I received my bloods back the next day, so hopefully this will be the case for you..  it's the waiting around and not knowing, it's agonising... I'm hoping your results come back fine... always here if you need a chat.. take good care xx

  • Des, you are a good person to have in the chat your words are calming xxx