CA-125 over 1000!! Solid mass found on ovary

[Rosie67]

Im terrified and hoped someone had a similar experience or positive outcomes.
I had a miscarriage start of August and incidentally they found a cyst. The midwife said it looked haemorrhagic. However as I have health anxiety and family history of cancers I spoke to my GP who to put my mind at ease said let's do a CA 125. WELL IT DID THE OPPOSITE! It came back as 1119 when normal is below 35!!
So i went privately for a scan as no one took me serious. Anyway the gynecology dr who saw me was super concerned and said they found a suspicious mass with solid components. Now I'm on a 2 week suspected cancer pathway.
Since this has happened I can't eat, sleep or do anything. Im a zombie and my husband doesn't know what to do as I've just not moved or left the house since I got this news 3 days ago now.
Im convinced i have cancer as my markers are just too high

Please anyone share an expeirence

Not me, but my best friend. Similar story to you. Cyst turned out to be benign. She has since had two healthy babies and no further gynaecological complications. Sending you positive vibes and healing thoughts.

My friend also had similar and it turned out to be a dermoid cyst - with teeth and hair! She refers to it as Freaky Fred. I hope that yours turns out to be similarly non-cancerous and can be easily removed.

I feel extremely annoyed on your behalf that no one would take you seriously and you had to get a private scan. This happens to women all the time and it's a disgrace. Whatever it turns out to be, it needs investigating and treating and it's awful that they dismissed you like that.

sorry for your loss OP.
miscarriage can raise your levels so maybe try and stay positive just now, like others have said, it’s not necessarily bad news.

Did your friend have high ca 125

Hi did you friend have a really high ca125 like me

Kind of similiar, went in for X and Doctor suggested ca125.....turbed out to be in the 400s , two weeks later the 700s. Turned out to be cancer, stage 1c. 6 rounds of chemo....18 months later im back to 85% of my old self. If you had no symptoms thent the miscarraiage may be causing the ca125 to rise. ca125 doesnt always mean cancer, it means there is inflammation. Get the scans in and take it from there 🙏🏼

Sorry for your loss OP. I had a 10cm mass on my ovary with really high CA125 levels, and got whisked in for surgery, preparing for the worst. turned out to be an endometrial cyst which was weird as I never knew I had endometriosis, never had any symptoms. Fingers crossed everything turns out ok for you too x

I think so but I'm not absolutely sure, as it was quite a long time ago.

I had ovarian cancer 12 years ago. When you hear the words, mass, tumour, cancer, you immediately think you’re going to die. Yet, here I am still going strong.

Sending love and strength to you @Rosie67 . ❤️💪

What a horrible time you’re having, OP. You poor thing.
I hope you get seen really quickly and that you get reassuring news soon.

I know you mentioned the mass but I did find this

‘An elevated CA-125 level on its own does not mean you have ovarian cancer. CA-125 is notoriously non-specific and frequently spikes due to benign conditions like regular pregnancy, uterine fibroids, pelvic infections, or ovarian cysts’

Could you also have had a molar pregnancy?

So glad it turned out okay for you in the end
Did your cyst appear somewhat solid?

I had an almost 6kg ovarian cyst that turned out to be stage 1A Mucinous ovarian cancer. My CA125 was 40. Six years later I’m in the best of health.

Op, everyone reacts differently to the shock of something suspicious being found and in my own case my Dr and my children had me involved with the psychiatrists the same evening. I had a complete and utter breakdown, it had been a long time coming, and I just want to say I can well imagine how scared you are.

Im sorry you’re so scared and that you’re suffering so much mentally and emotionally.

What where your symptoms x

@Rosie67none apart from an ever expanding tummy. It all happened quickly but even so my cyst was 6kg when removed. Treatment wise I had the cyst removed along with my womb, ovaries, fallopian tubes, cervix, appendix, lymph nodes and omentum. There was no need for chemo at stage 1a but I would have had it at stage 1c. I then had check ups for 5 years with the first two years having the biggest change of recurrence. I’m now 68 and in the best of health physically and emotionally.

How are things, OP?
Just thinking of you x

Have you had an appointment through yet?

Hope it came back positive OP.

I’ve been referred for the 2 week referral due to ovarian cysts 3 times. Twice it was only dermoid cysts and the ca125 was borderline.

One time when I lived abroad, the ca125 came back much higher and I had a dermoid cyst and a mucunous cystadenoma on the same ovary. They were much smaller than the other two dermoid cysts (around 5cm in total whereas the first dermoid was 13 and the other one 7).

I’m so sorry, I’ve only just seen your question, yes it did, which I think was one of the reasons I ended up in surgery s quickly.
I hope you were have had positive results @Rosie67 🤞