CA-125 result of 80, now I have to go for a transvaginal and transabdominal scan on Tuesday. Can anyone relate? I'm worried sick

Hello everyone, 

Iv been experiencing terrible periods for as long as I can remember. Iv seen several doctors over the years to no avail. Anyway, I had a routine smear test a couple of months ago which came back clear, but during the examination the nurse noticed I had a small growth on my cervix. On returning for a follow up appointment the doctor assured me that the growth was merely a skin tag. Whilst there I thought I’d take the opportunity to discuss my other symptoms around my periods. I explained that I suffer with sporadic sharp pains in my sides, a dull ache in my lower abdomen and awful period pains with heavy clotting and extreme bloating during my cycle. After hearing my symptoms she referred me for a full blood count. The results came back all clear apart from my CA-125 level which was 80. When she called to give me the results she did her best to reassure me that ovarian cancer is very rare in someone my age (38) but that I had to go for a trans vaginal and trans abdominal scan which is for this Tuesday.

im worried sick, I can’t sleep or eat. I have 4 beautiful children and can’t bare the thought of not being around for them and my lovely husband.

can any body relate? Or have had a similar situation who could put my mind at ease? 
thank you and much love 

  • I am in a similar situation and didn't want to read and run. I also had a CA -125 result of 85 three weeks ago. Since then I've had ultrasound scans and they found my right ovary is enlarged, I have fluid in my abdomen and my bowel is attached to my uterus. I am having a CT scan next week and will see the consultant the following week. Sadly my Mum died of ovarian cancer when she was 30, so they think it's that. I think it's endometriosis personally, as I experience excruciating pain on the day before my period and first two day of it. Apart from that, I'm pain free. I am 43 and have two children (they are adults now).

    It's a worrying time. I wish you the best of luck

  • Offline in reply to L-aura

    Thank you so much for replying.

    After looking at ‘doctor google’ my symptoms suggest uterine fibroids and endometriosis. The only thing that’s mildly putting my mind at ease is the fact that Iv suffered with these symptoms for ever. Even before my eldest daughter (19) was born. 
    I wish you all the luck in the world for your scan next week, I hope it all goes well. 
    much love x

  • Offline in reply to Faye267

    Hi Faye,

    I typed all my results into 'chat gpt' and it kept saying endometriosis, so I'm sticking with that. I don't want to go down the rabbit hole. I'd prefer them to do a hysterectomy if they still think it's ovarian cancer in two weeks time. I feel fortunate that I have already had my children, so I don't need to preserve my fertility. I just want to remain healthy and live my life with them. 

    I think the waiting for an answer is the worst part, especially as I feel fine until my period comes.

    Try not to worry as the majority of people are fine. The CA -125 level can also be raised due to endometriosis or if you were on your period when you had the blood test.

    Laura x

  • Offline in reply to L-aura

    Yeah same here, I don’t want any more children so depending on my results on Tuesday, I’d be happy for them to preform a hysterectomy….i know I’m getting way ahead of myself but i have found myself in a rabbit hole the past few days and have literally gone over every possible scenario in my mind. 
    I’m not a very patient person so this waiting is driving me mad! Though, I am very thankful that my scans are for Tuesday after only getting the blood results through on Thursday last week. Iv read that some people have had to wait two weeks, to then have it postponed due to strikes. 
    Keep me posted on your CT scan updates (if you can) 

    take care, 

    Faye x

  • Offline in reply to Faye267

    I know what you mean, when my GP phoned and said "...I think you may have ovarian cancer" I went into shock. I started shaking and crying. My immediate thought was that I don't want to leave my children behind like my Mum did. It was awful. I feel more positive now, even though the registrar was worried at my appointment this week, as he explained my ultrasound scan results. There's not a lot I can do now apart from go to work as usual, enjoy my time with my children and try and manifest a positive outcome.

    I will let you know what the consultant says on the 25th March. They should have a plan by then and will have the CT scan results in front of them.

    When you have the scan on Tuesday, don't worry if it takes ages, they will take their time and have a good look. The sonographer will also be unable to tell you what they see either as your GP will need to let you know, then refer you to the hospital if necessary.

    Sending you good vibes 

    Laura x

  • Offline in reply to L-aura

    That’s good to know, I wasn’t sure if I’d get the results there and then or if I’d have to wait for my GP. 
    im glad you’re feeling more positive now, I think I need to take a leaf out of your book and just face it all as it comes.

    thanks again for all of your advice. 
    Faye xx

  • Hi Laura, 

    just wanted to let you know that Iv had the scans today and the outcome is positive!! No sign of the ‘c’ word but I do have benign cysts on my ovaries. The one on the right is what seems to be causing me all of the issues. I can’t remember the name of it but the doctor told me that it may require further treatment as that particular type of cyst tends to grow over time and mine is already measuring at 5cm so has sent my results to the GP and now I have to wait to discus treatment options with her. 
    im honestly so relieved, I could have kissed the senographer!!

    I hope you get good news on the 25th.

    please let me know.

    much love, Faye. 

  • Hi Faye,

    That's fantastic news! I'm so glad that the outcome was positive. 

    The hospital called me yesterday and I was given an urgent appointment and had my CT scan this evening. It's such a strange feeling when you are connected to the iodine drip, you feel warm all over, then feel like you've wet yourself! Thankfully they warned me about it in advance haha 

    I will let you know how my appointment goes next Wednesday. I am still hopeful it's endometriosis and not ovarian cancer, but time will tell. 

    Have a nice rest of the week 

    Laura x

  • Oh wow! That sounds intense! Haha. I’m glad it went as well as it could have though, keep me posted about your results on Wednesday-sending loads of luck to you. 

    and, thank you for replying

    Faye xx