Elevated CA125 of 51 - Advice please - My Ovacome

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Elevated CA125 of 51 - Advice please

Nicki130473 profile image

Hello I am a newbie here but would welcome some advice as really worried. I am 44 years old and back in June went to docs as I had bloating and needed to go the wee a lot. She was not overly worried and said it was due to go constipation as I suffer with IBS from time to time. But she did test my CA125 level. The first time it came back to 41 do I was referred to a consultant. He was not overly worried and I had an ultrasound which was clear. He wanted my bloods to test mid cycle and he thought having my period may have elevated last time. However this time it came back higher at 51 so he is sending me for a CT scan on Monday. He said they just are covering all areas as recently they have had a case where someone's level were 51 but a CT scan picked up early signs of Ovarian Cancer. I understand that the CA125 is not full proof and other conditions can cause this but I am just so anxious and struggling with this. Any advice would be much appreciated so I can put my mind at rest xx

20 Replies

Hi Nicki, I know it's easy to say try not to worry, but if anything untoward is found they will have caught it really early & be able to act on it quickly. Hope you get a good result.

Nicki130473 profile image
Nicki130473 in reply to twiggy66

Thanks for that x I am trying to be positive about everything and I am sure the experts know what they are doing and the ultrasound was ok which is good. It's just a waiting game I suppose and I will have to wait 2 weeks until I have my follow up appointment which feels like forever x

twiggy66 profile image
twiggy66 in reply to Nicki130473

Yeah not knowing & waiting are the absolute worst cause your mind tends to go into overdrive, hope time passes quickly for you & you get a good result

Hi there

So sorry that you have this worry. As you say ca125 can be raised by other issues and the fact that the ultrasound did not find anything is good news. A very high level ie in the thousands is very indicative of cancer for most people , but a low level does not entirely rule it out, is my understanding.

I had a huge mass and a ca125 of 69. I was assured that this was just one big cyst after an MRI and a test a few weeks later came back at 48. However when I was operated on about 2 months afterwards , the tumour had a 4 cm borderline area in it. This didn't need chemo , but it did involve several years of appointments.

So the doctors are doing the right thing for you and if there is anything there then they will have picked it up early which is great for your future. But fingers crosses it's just nothing to worry about. I have no idea of your circumstances wrt children etc. But if you are offered surgery , consider the fact that the fewer female organs you have the less likely you are to develop female cancers in future.

Try to stay bust between now and your tests , get as much exercise as you can.

Take care and let us know how it goes xxx

Thanks for your advice Charlie 12 it's very helpful . My consultant did not think 51 was very high but is trying to cover all areas and I think as it has risen from before. I have 1 daughter who is 6 and we have no plans for anymore at my age but after having a c section they found 2 large cysts on my left ovary and most of this was removed so I only have 1 and a bit if it was needed to be removed. Life is always busy with a small one which is a good distraction.

You hit the nail of the head Nicki--waiting is the hardest. As you have read above, it could be from so many things and you will need to wait. The other person who had the OC with a ca125 or 51 is just her...we are all different. Just some advice that was given to me due to my obsessive nature worrying about this disease is "what advantage does worrying have? What does it do for you?" If I am in the moment and worrying, I do ask myself that and sometimes get a respite!!! Nothing changes because you worry--not saying you don't have a reason to, or shouldn't, just try to find ways to limit it so you can enjoy your life! (I know easier said than done) Give it a try. Good luck and keep us posted!

It's hard not to worry but your medical team are doing the right thing by investigating you thoroughly and by keeping you advised as to what and why they are doing these tests. If this disease is caught early the prognosis is excellent. Hopefully, the CT scan will reveal nothing but do try and not over-think things at this stage. Whatever that scan shows on Monday, is already there, or not there, to be shown. No amount of worrying on your part will change this one little bit. On the other hand, worrying may well make enjoying life to the full over the next couple of weeks more difficult.

Not an easy time, I know. Try and push the thoughts out of your mind for now.

Thanks Ladies for your kind advice. You are right about worrying, my husband says it's wasted energy but I suffer with anxiety so hard sometimes. I think it's just the shock that the levels were elevated as my symptoms had pretty much gone it fingers crossed it will be ok. I may see if I can get my follow up appointment sooner than 2 weeks after the scan x

The waiting is brutal, it really is. Try to only think as far as the next appointment or milestone. My mind tends to race forward so i am rubbish at doing that but my special person who im supporting through it finds it much more straightforward to cope with if she breaks things down into chunks and deals with one thing at a time. No long term 'what ifs' - human nature to think like that though isnt it. I tried to keep her really busy to try and divert her brain a bit from the waiting. Hope you dont have to wait too long.

Hi Nicki

You have some good advice here- I just wanted to add that you don't have to have a diagnosis to access support from Macmillan or the OC helplines. You may think that approaching them makes it seem like you've accepted a cancer diagnosis but they will be happy to talk support you now and wave you goodbye when you discover it wasn't c after all.

Anxiety is crippling and if yours is bad you deserve support through this xx

Thanks for all your great advice ladies it must appreciated. Tried to keep busy this weekend and today I have my CT scan to up early having a nice cup of tea before I have to fast for 4 hours. I am trying to be positive and hoping the reassurance of previously had the ultrasound it will be ok x

twiggy66 profile image
twiggy66 in reply to Nicki130473

Everything crossed for you Nicki good luck 🤞x

Hi Nicki.

A horrible time for you; we've all been there. Having very young children of course adds to the extreme anxiety as I recall only too well. But be heartened by the fact that you have such enlightened medics. If only others were the same! Also they are not overly worried; these tests are precautions. I think you would have sensed from them if they thought there was cause for concern.

Nothing showed on your ultrasound (mine was very evident) so if there is anything unwelcome it must be very early. Hopefully all this will be behind you very soon and you have nothing to worry about. Keep us posted.

Love Catherine x

PS. Just rereading your message I realize you didn't mention children. I'm losing it !!! X

Thanks for those kind words. I do have 1 daughter , you are not losing it and you are right it makes you more anxious but also good for distraction. I am lucky to have a very good consultant who is covering all areas. The thing that is niggling me is that my doctor said she thought the blood tests would be ok and they were not and then the consultant was reassurring and they were not again and now I am having a scan. I feel awful keep moaning about this as I haven't even had a diagnosis yet but my dad had cancer 8 years ago and he was told for a year everything was ok and it was not but luckily he is now in remission and ok xx

Hi Nicki.

No, no,don't feel awful about worrying. Despite all the amazing treatments cancer is still a life threatening disease. And having it's possibility being suddenly thrust into your life is very very scary and a lonely place to be as we can all testify. It is an awful limbo and I hope you get the best news possible news. My scan did show up a huge malignant mass but it was stage 1 (no further treatment) and that was in 1988! Wishing you all the very best.

Catherine x

Thanks and that's great news that you were ok x I had the scan which we fine and just need to wait 2 weeks for results. So I am going to try and put it to the back of my mind and getting on with every day life xx

Hi Ladies xx I have my appointment on Monday to get the results of my CT scan which I am feeling mega anxious about. Just worried that I have had to wait 2 weeks so therefore it means they must have found something sinister otherwise they may have let me know before it was all ok . Just wondering is it the normal procedure to have to wait 2 weeks for your results and this is private too xxx

Evening Ladies just to let you know I finally got my CT scan and it came back all clear. I have a burst cyst on my right ovary which my consultant is not overly concerned about but has advised for an ultrasound in 4 weeks. Feel really relieved now and would like to thank you all for your support and advice and wish you best of luck for the future xxx

twiggy66 profile image
twiggy66 in reply to Nicki130473

Fantastic news Nicki so pleased for you. Make sure they keep an eye on your cyst in future. Happy days . ❤️

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