Ovarian cancer?

[Aqua20]

Hey, I'm just wondering if someone has been through something similar with it ending well.

I was in hospital a few weeks ago, for something else, on discharge i was requested to have bloods taken once a week for 3 weeks. On Friday my gp phoned me and was asking about my periods, they were erratic for 2-3 yrs and iv not had a period since last august, i put it down to being peirmenopause as im 41. She explained I'd need an ultrasound, my CA125 is really high at 1337 😬in the past few years I have flare up of intense coughing that wouldn't stop until iv vomited. Today I was sick twice, once blood came up. I could feel like there was something stuck in my teeth so I brushed them to reveal a 5p size blood clot, and now my teeth won't stop bleeding🤦‍♀️ (and I'm on warfrin) my tummy is feeling very queasy today but I can't eat much.

Thank you for reading this if you got this far, I'm scared as I already have a preexisting health condition, not sure how much more I can take.

There are many reasons that this test maybe high…

Its not relied upon for Ovarian cancer for that reason

I stupidly googled what ca125 was and the first thing I saw was OC so I keep over looking the other stuff, I know I shouldn't but can't seem to help it

Hi @Aqua20

Sorry to hear you’re going through this. I went through it myself a few months back and did unfortunately get the OC diagnosis aged 36. I totally understand how scary it is right now and how long the wait feels. Chase your scan appointment and say you’d take a cancellation.

Like the PP said, there are benign reasons your CA125 could be high so don’t lose hope yet. Have you had any other symptoms related to OC such as bloating, frequent weeing or bowel changes?

Please feel free to PM me if you want a hand hold through your wait, we also offer support to people on the 2 week pathway over on the cancer thread in general health.

@AGreatUsername thank you so much for getting in touch. I'm so sorry for what you are going through right now. What have they said treatment wise? Do you remember your blood numbers?
Yes def changes to bowels, I'm already taking diuretics so constantly peeing but still have 3-4kg of water retention, I have lower back ache and eat next to nothing daily, all iv eaten today is a sausage roll, 2 chicken nuggets and had a cup of tea, been forcing myself to keep sipping water, iv lost weight, down from 69kg to 50kg, fx its nothing but I feel so concerned, I have a young child and keep loosing it with her at the moment, it's not her fault!

This sounds so hard, OP. How long do you have to wait for the scan? Can you do something "productive" while you're waiting, to give you some sense of control? Eg planning for the future in case you get bad news?

My initial CA125 was 420. I have read that the number is almost irrelevant once it’s over 35 though so don’t panic because yours is higher. I have had debulking surgery and am undergoing chemotherapy now, an unpleasant journey indeed but hopefully a long one!

Definitely chase your scan, and if you do need support just ask, I remember the wait clearly and how scary it is. And stay away from google!

@AGreatUsername @Tentative2 thank you so much ladies for the reply.
My scan is on Friday morning so not long to wait. I'm going to spend the day getting my daughters things out and ready for back to school on Thursday and have organised for a friend to visit this afternoon too although I haven't spoken to anyone about this yet not even my husband. It's the night times that are bad as I can't sleep.

@AGreatUsername oh I didn't know numbers didn't matter, as with most things I assumed the worst. Its good to hear the drs acted swiftly for you, ill keep wishing for your speedy recovery.

I hope you're ok, OP. I had a cancer scare not long ago, and spent some time lurking on the cancer thread here on MN. There are some very strong women on that thread, supporting each other, and I found it helpful in a way. Of course it might not be for you though.

@Tentative2 I'm ok thanks, but obv still concerned. Will they tell me the results straight after the ultrasound or will I need to wait longer?

I had it 20 years ago. My Ca125 was up in the hundred thousands . I had a large ( ie football size)ovarian adenocarcinoma. Had the surgery the next day, then a pelvic clearance the following week. That meant that they did an exploration of the whole abdomen and removed all uneccessary bits and pieces, and biopsied everything. I had four rounds of chemo after that. So yes it's possible to have oc and have a good outcome.

I wish you well - do your homework and educate yourself so you can understand what the doc is talking about. Your Ca125 reading could mean àny number of things but it's best to be aware of your possibilities before you see him again.

I got my results straight away, I'm sure you will too. Best wishes.

Stay away from google. Write down some questions for your drs.

best of luck

My ultrasound was with gynae; they told me immediately what they had found. They couldn’t confirm but were clear it looked suspicious. If your scan is with X-ray it can take longer as they’re normally interpreted after and sent on to your GP.

@ShippingNews thank you for sharing your story, I'm so glad things are better for you.

I will defo be staying away from Google, just got a call from the hospital,they have cancelled my appointment tomorrow and moved it to next Friday 16th now.

@AGreatUsername I'm just having an ultrasound as far as I am aware

That is bad luck, OP.

@Tentative2 you'd think the hospital had more than one sonographer

@Aqua20 I hope today goes well for you, I’ve been thinking of you this week and how nervous you must be. I hope you’ll update this thread, and support is here if needed.

@AGreatUsername I was shaking so much, the good news is that everything looks fine, just doesn't make sense why the markers are so high. Been told to go back to my gp.
Thank you for asking x

Brilliant news! I’m so pleased for you.

I'm glad for you OP 🌷

I’m an ovarian cancer survivor, nearly 10 years now. The CA125 test is not a reliable marker. My CA125 was always normal, yet I had a tumour 10cm x 6cm on my left ovary.

Do you eat a lot of meat @Aqua20 ? High meat intake will significantly raise your CA125.

@Huntswomanonthemove I'm so glad you're ok now, it is odd how these markers work.

@MatchaTea I don't eat much meat at all, maybe once a week if that.

Hi @Aqua20 my story is the other way around to yours.. I visited GP with pain during and then spotting after sex. They sent me for an ultrasound and trans vagina ultrasound.
My GP called me couple days after to say they've detected a complex ovarian cyst with separations (meaning it's not just a fluid filled cyst but appears to have walls within the sac etc) he then said he wants me to have a blood test asap.
The blood form says it's testing for CA125 which I googled and see it's testing for cancer. Great...
I had the test today so I guess I'm waiting until next week for the results.
I'm 31 and have an 18 month old.
Shitting bricks all weekend now 😩 hoping it's not the worst!
What did it turn out to be in your case??

Septations*