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

Parents
  • 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

  • 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

Reply Children
  • Hi... that's very kind of you.. ️.. we are all having the same feelings and thoughts at the moment... and if I can help someone feel like they are not on their own and bring them some comfort knowing someone else is there who fully understands.. I'll be here xxx

  • So, yes my blood results came back and they show elevated levels of CA125.  For now, all I can do is wait until the MDT have their meeting on Tuesday next week, but I imagine it will be the start of a load of follow up tests to see what we're dealing with.

    Good luck ladies xx 

  • Sorry your bloods came back elevated. I had my MRI scan today so another test out the way, just got to wait until 28th March for the results :-( 

    Hope everyone manages to enjoy the weekend, I'm going to try and do some meditation (I listen to the calm app but have never really 'meditated', thought it might help relaxation).

    Sending love xxx

  • Big hugs to you ️.. let's all be here for each other.. have a good weekend xxx

  • Hi guys 

    Just wondering if you all could tell me the symptoms you had? I have a raised ca125 and I have bad symptoms. Just would like to know what other people are dealing with If that's okay.

    I've just signed up within the past 30 mins so I'm extra new lol

     

    Look forward to speaking to people

  • Hi Lucky,

    I don't have any symptoms, I went to the GP with something unrelated and an enlarged ovary was detected by scan, blood tests were conducted which shows elevated CA125 levels. I'm now waiting a CT scan.

    Hope you're ok.

    JM

  • Hey im in the same position, trip to hospital a month ago with suspected appendicitis to find out i have a large right ovary 4.5cm, after 3 week wait i finally had my CT abdominal and pelvis scan yesterday, have been in pain all this time, was told yesterday could be a 3 week wait for results, so more waiting.  Right hip pain and bloating, fed up just want answers and to feel better, hope you are all well xx

  • Hi Lolly,

    welcome to our little thread.  Can I ask roughly where you are geographically? I'm in Northamptonshire. I've got my ct scan tomorrow and the thought of having to wait another three weeks for the results is rather daunting.  How are you coping? Has your GP offered something for pain management? If not, it might be worth reaching out.

    Keep in touch.

  • Hi im in the west of scotland, im on pain medication for back problems so have 30mg codeine, i work with kids and find that to make the pain a little worse, but just want to keep busy, hope all goes well for you tomorrow x

  • Hi Lolly and welcome to the worst club ever the waiting is horrendous, I chased my biopsy results today and just had a reply back from consultant to say she would contact me when she had them. I had some reflexology last night to try and relax me a little, did help with sleep but back to worry again today. It's the last thing you think of before you sleep and the first thing when you wake up...well it is for me. How is everyone else getting on? Tink have you had your results? X