Elevated CA125

[Weddingspeakup10]

My CA125 blood test result has come back elevated ( reading is 38). I'm waiting for a pelvic scan, but I feel suicidal, I can't eat, sleep or stop worrying about Ovarian Cancer which is what the scan pelvic scan will check for. Should I cancel the scan? I just can't cope anymore. I have young children. I have just turned 40.

In my lower abdomen. I had a 15cm cyst which was making me look pregnant, especially when lying down.

Oh OP, I was you, back in 2018 with 3 young children all at school. It was terrifying. My CA125 was 128, I was scanned & they found ovarian cysts & adenomyosis. I had the tests because I had abdo pains. No cancer was found.
A new (very thorough & proactive!) GP decided to run the test again last year. It was 86. This time they did a pelvic MRI and I've added endometriosis to my list of pelvic joys!

I can't say don't worry but the test is a marker test and can be affected by so many other things than cancer. Take care

Thank you, I hate this. Time is just going so slowly. I'm having constsnt panics over walking into that hospital. I know I'll burst into tears. I'm terrified

Whar shall I do after the scan, will I see anything myself on the scanned image?

Mine was high and I'm hugely bloated
It's endometriosis with a 10cm cyst

There's nothing you can do so just concentrate on eating and sleeping and keep yourself busy. Honestly when you do have an emergency medically you just kind of get on with it. I panic about my teeth, so a filling falls out and I'm hysterical. Yet spinal surgery as an emergency I didn't even blink at

Thank you everyone so much for your support, I'm in a very dark place. I will keep posting. Please keep posting any signs of hope. I really really want to be able to see joy again, sleep, eat etc xx

I had an ovarian cyst so my ovaries were removed when I had a hysterectomy for fibroid. When I was in hospital, a lady opposite had a huge ovarian cyst and was very bloated. Her CA125 was high but not very high, I think she said about 50.
Anyway, she had a hysterectomy and when the consultant came round he said the cyst was very big but looked completely benign. I saw her in the follow up clinic and it was confirmed as a harmless cyst.
There are so many benign things that could be causing your CA125 to rise, I think your GP is very irresponsible to do the doom and gloom act.
Good luck with your scan. It doesn't take long. Don't get hung up on if they do or don't tell you what they see, because some do and some don't. When I had mine she told me what she saw. When my friend had hers, the radiographer said before the scan even started that she wouldn't be telling her anything. Everything was OK but she only found out when she had her follow up appointment.

Bring someone with you? If I was your friend I'd have your kids so your DH could go with you. Emergency babysitter, family. Or take one of those friends or family members with you?

I have to go on my own. I have only told my husband. Will it be quick? I just can't being anyone else without telling people and I am just not ready to do that xx

Can you find a babysitter/childminder that will do a one-off shift? Not someone you know so no need to explain why? For all they can know you just want a day out together.

I don't think most people would ask anyway. If someone asked me to babysit because there was an important appointment you should ideally go to together, I'd not ask why. That would be intrusive.

I will have to go on my own. I need to get through it, but my mind isn't here right now. I'm in a dark place but I can't ask anyone else to help.

That is true, you do just have to get through it. And you will.

I also think you need a new doctor. I was seeing one doctor who tended to be all doom and gloom and worst case scenario about everything. I stopped seeing them and saw a more encouraging doctor instead. It really does help.

I will do. This doctor of mine has given my nightmares. I'm really struggling

Yes it's quick. Around 10 minutes I think mine was.

Thank you. I need to try and go. I've still not eaten and I can't sleep, so just need to go now.

I was in a similar place to you a couple of years ago. My CA125 was 1235. I was terrified waiting for test results. I had a scan and an ovarian cyst was found and endometriosis. Long story short, my CA125 was monitored and did drop as time went on although was never in the “normal” bracket during those times. I had surgery to remove the cyst and what was stage 4 endometriosis. This was tested for cancer and I also had swabs of peritoneal wall and maybe more (can’t remember exactly) whilst they were performing the surgery. All came back clear from cancer.

I don’t know to this day the exact reason why it was so raised. I know it can fluctuate with your cycle.

Easier said than done but try not to panic and definitely don’t google.

I had very unusual bleeding before Christmas and was referred under 2WW for investigations re: possible cancer of the womb.

I was terrified. Scans first and that terrified me. Results a week later- not good. GP had to give me 10mg tablets of diazapam. Had hysteroscopy under general anaesthetic (tried without GA but I have a tilted uterus and it was too painful) and biopsies. By then I had waited 5 weeks but thankfully the results were fine and there were explanations for the womb lining and the bleeding that were very commonplace.

The feeling of continual panic and terror, wanting to just run away from it are all things I recognise. I couldn't explain to anyone just how terrified I was. The consultant told me 94% of women with these symptoms do not have cancer . She reeled off a list of other things it might be but I was just catastrophising all the time- playing through the scenarios, hearing the conversations with the consultant, what would happen to me. I had physical symptoms- racing heart, shaking, fainting, feeling like I just wanted to run away, not being able to sit down-just needing to walk and walk. It wasn't helped by a GP who said something thoughtless, the man who did the scan (whose behaviour shocked me) or the almost 3 hr wait to see the consultant at her clinic for the scan results.

I have caused myself enormous stress and worry- am still getting over it and think about it every day.

Will be thinking about you on Monday. Is there no one who can go with you? It makes it easier if there is someone there to talk to you .

I am going to say try not to worry but I know it's not possible. The consultant said to me that I was so upset by it all she is sure I suffer from GAD (I think that's what she called it) and my GP has now arranged for me to have some 'therapy' with a counsellor. I couldn't control it at the time and it has scared me for what would happen if I had anything else.

I hope you get good news and can put this behind you.

I had cancer when my DC was young, many years ago. The fear when waiting is incomprehensible for anyone who hasn’t experienced it. I think seeing your GP would be wise, perhaps to have some short-term tranquillisers prescribed.

Where were you in your cycle when you had the blood test?

It can be more elevated than that just from being on your period. CA125 is only really useful as a diagnostic for cancer in post-menopausal women. In pre-menopausal women it's normally indicative of something like endometriosis. My ca125 was 115 when I had an endometrioma (benign cyst caused by endometriosis). My abdomen was also really bloated - the cyst was larger than a grapefruit when I had it removed.

This is a worrying time of course but you need to try and not go down this dark rabbit hole.

You've had lots of reassuring replies so far of real life experiences.

You haven't been diagnosed with ovarian cancer. You are not dying. Try, as hard as it may seem, to not get ahead of yourself. Try for the sake of your family.

Take a deep breath. Realise that right now, you haven't been given a terrible diagnosis. Go for the scan, take it from there.

Correct @GFBurger. I had odd mid cycle bleeding and a lump in my groin that I could feel when I lay down. My CA125 of 8 was completely within normal limits so it was not a reliable test for me (it's a very unreliable test generally). OP, I totally understand your fear but you must go for further testing and until you receive a diagnosis you really shouldn't jump to conclusions. There are several completely benign conditions that could be causing your symptoms (IBS, endo etc). You're using up valuable energy worrying about the 'what if's'...my dad would say 'what if it's not?'. Take care, how all goes well.

Thank you everyone for your responses and support, it's been a really hard day today. I just feel drained x

Good luck OP let us know how you get on x

Hope it goes well today.