Hi there thanks for contacting me. I had a ca125 level of 750 before treatment.  Really really high. Turns out I had a 19cm tumour on my ovary. I was admitted for a full hysterectomy in March including removal of the tumour and lymph nodes. 6 months later I feel great. My ca125 has come down to 25. They decided post operative chemo was not for me due yo covid. so they've put me on hrt. Letrozole. 

Please don't give up. I thought it meant certain death when I was first diagnosed but it's not the case. Be positive and keep on top of it. If they catch it early enough u can make a full recovery. Keep safe and positive thoughts xx

Hello Cheiis,

How wonderful to hear from you and also that you are feeling great.

Thanks for the encouragement. I am still awaiting results.

Will definitely update you.

xx

Hi, 

Can I ask was your tumour picked up on an Ultrasound scan? My ca125 level is 46 and my scan showed an avascular lesion in in my womb 1.2mm by 1.3mm by 1.2mm appearance not typical of a fibroid. Ovaries on USS showed no masses and are a normal size and shape. My gp has referred me to gynae for further investigation. Struggling and anxious waiting. I'm so worried its cancer feeling so upset, and lost just now. ️

Hi there

im worried sick about my ca125 being 67 and just wondered how you got on? Did you have other symptoms too? Hope you're very well and thanks x

Dear Speti 

I have been going through exactly same situation as yours. I have Adenomyosis, Fibroids, and Cyst but all to be in small size so doctors suggest no surgery required. But I have been going through all these issues since last almost 2years now and all started after my 2nd pregnancy, I have had merena coil inserted and removed as well. 

Now since last month I had all symptoms of ovarian cancer suggest hence GP done CA125 test and which came @ 126 count 

I am waiting for further scan and gynec appointment but wanted to know how is your diagnosis going on and what are steps further 

appreciated your quick response to make me feel better 

Thanks 

Hi,

I am in exactly same situation. Woudl be nice to know what your final results was. My CA 125 is high as well. I do have small 5mm fibroid and overian cyst (dermoid) as shown on ultrasound and CT. My gyno wants to just monitor my CA levels but I am going carzy worried about it. I just want to know what can be the reason for it be going up. It was 38 now it's 55. I am so scared...

thank you for your response xxx

Hello, I have come across this thread.  I had a haemorrhagic cyst on my left ovary which went away.  CA125 was 97 but is now 101 even with the cyst gone.  Level seems higher than most other people here.  I have been referred for CT of upper abdomen and MRI of lower abdomen but wait is about 3 weeks.  Have also had tests for breast, pancreas, colon and bowel cancer but they were all in normal range.  Have now convinced myself I have liver disease so have stopped drinking any alcohol.  Such a stressful time as trying to buy a new house and going through divorce.  Plus I haven't seen my family in a year as they live 3 hours away!!

Hi Karen,

it's good to see these posts and know others are having similar symptoms and have made full recovery's.

like you I recently had MRI (after ultrasounds and biopsy's that found nothing worrying).  The MRI found a cyst in both ovaries and fibroids - they also found Endometriosis which I see hasn't been mentioned.  It can be with you for many years and can cause raised CA125 results.  It can cause lower abdomen pain and post menapausal bleeding.  All of which I've had.  In younger years it can cause heavy painful periods.  It can make it difficult to get pregnant -  I stopped any contraceptives at 22 with my first marriage.  I have never taken anything since and I have had 1 son at 31.  So reading about it has slightly put my mind at ease regarding Cancer, but it does say there is an increased risk of Ovarian cancer and so I have been offered two options laparoscopic (keyhole) laser treatment to remove Overies and Fallopian tubes and they can then also check the area.  Or, hysterectomy.  I have opted for the laparoscopic procedure.

would be good to know how you got on if you have already had MRI?

Stay safe 

Take care, hope all goes well

Mel x

Hello,

I am awaiting a date for my MRI.  I have had 3 ultrasounds up to now.  Glad to know that the MRI will hopefully pick up anything missed by ultrasound.  i haven't had any fertility issues so would be surprisd if they find endometriosis but will just have to wait and see