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C125 test, please, please help

(23 Posts)
barbie1 Tue 28-Jun-11 13:12:35

I need some help.

Dh is away and I am thousands of miles from home sad

Went for scan @7 weeks on sunday, baby fine but cyst measuring 8cm was found on my ovary. Had bloods taken for cancer markers.

Dr just called with results and said that they were elevated and i have to go to hospital sooner rather than later. She is booking me an appointment now.

Anyone with any experience of this, I am panicking and thinking the worst and that we might lose the baby sad

barbie1 Tue 28-Jun-11 13:27:29

anyone

MumOfStan Tue 28-Jun-11 14:32:38

I'm sorry I don't have experience of the cancer marker test but at a 7-8 week pregnancy scan I did have a cyst on one ovary which the dr said was normal and would likely disappear (something called a corpus luteum cyst i think).

I really feel for you, you poor thing, it must be dreadfully worrying, and if it were me i'd be inclined to hurry up their 'sooner' to 'even sooner' due to your being pregnant, and not having your husband here, and see if you can be seen immediately, or at least in the next few days. Alternatively if they can'd do this, is there an early pregnancy walk in center at your hospital? Could you turn up there, and tell them - I don't think they'd be likely to turn you away given what you're going through.

barbie1 Tue 28-Jun-11 14:35:44

I have emergency appointment tomorrow, i have google (yes i know i shouldn't) my results are high and it doesn't look good. Im hysterical sad

mejon Tue 28-Jun-11 14:39:18

I'm sorry that you're having this worry but please be reassured that lots of things can give you elevated results - being pregnant itself is one. I had a similar experience when I was pregnant with DD1 5 years ago. Several sizable growths were seen in my 12 week scan - the doctor thought they were probably fibrioids but sent some blood off for a CA125 test just to check. The results came back as elevated and I was referred to an oncologist. I was fairly reassured by him that my result of just under 100 (if I remember correctly) was - albeit on the high side for a 'normal' person, very low as far as ovarian cancer is concerned - the results would need to be in the 1000s for this to be a possibility and even then more tests would be required to confirm it. As I was pregnant and just to completely rule anything else out I had several months of to-ing and fro-ing with more blood tests (each time the result was lower), scans and finally an MRI at 32 weeks when everyone finally agreed that they were 'just' fibroids and I was able to enjoy what was left of my pregnancy.

Please try not to panic (easier said than done I know) - chances are your reading is higher because of all the pregnancy hormones and the ones in the cyst. I obviously googled like mad when I was going through it - it is very rare in younger women and would usually present with other factors too like pain and bloating. Hopefully your doctor is just being over-cautious.

MumOfStan Tue 28-Jun-11 14:41:42

It's good you've got an appt so quickly and the sooner you get some better information from the medics the more you can work out what this all means. Try not to stay hysterical, although it's understandable, it will exhaust you and make you feel worse. Is there a close friend or relative who could come and be with you til the appt? I really hope you get some answers and let us know how it goes. Fingers crossed for you.

MumOfStan Tue 28-Jun-11 14:46:17

Also just wondered if you'd read this (I don't think it's the last word on the whole thing as it's not a medical journal or equivalent) en.wikipedia.org/wiki/CA-125

MumOfStan Tue 28-Jun-11 14:47:20

sorry published too soon ,but it seems to suggest it can be elevated during pregnancy and also it's not a massively reliable indicator in younger, premenopausal women....not that I am doctor or anything.

barbie1 Tue 28-Jun-11 14:50:03

Thank you, can hardly see through the tears. Bloody hormones. We are trying frantically to get dh a flight home from Saudi (we are in dubai) but he is not contactable for now.
My appointment is at 11.30 am tomorrow, i have had the internal scan already and the bloods, what will they do next?

Elibean Tue 28-Jun-11 15:47:40

Just to add what others have said - cysts at this stage of pg very common, just not normally seen as scans normally later! Also would think hormone levels playing havoc with blood tests - and anyway, cysts can cause CA125 to go up. Its a notorious test for false positives, hang in there smile

Big hugs, and congrats on your pregnancy - good luck at the hospital.

barbie1 Tue 28-Jun-11 16:28:33

Dh is trying to book a flight home now, i have no more tears left to cry...

Endometriosis can also cause CA125 to be elevated as well, there are many causes of raised CA125.

Please do not google any more. Be kind to yourself and do not panic yourself further. If you're still really worried talk today further to the doc who called with the results.

barbie1 Tue 28-Jun-11 16:39:46

Doctor has left for 4 week holiday, she called as she was leaving the surgery.

Do you know by how much endometriosis could elevate the result?

My doctor isn't the most tactile of people, in fact after sundays appointment we decided to write a letter of complaint. She really wasn't forth in answering any questions. All she could say was that my reading was high, could be cancer and will have to choose whether to carry on with pregnancy shock

I am praying the the doctor at the hospital is more sympathetic

mejon Tue 28-Jun-11 16:53:51

Sound like your doctor could do with some lessons in diplomacy. Hope you get some more sense from the hospital. Will be thinking of you.

25goingon95 Tue 28-Jun-11 21:29:42

barbie hope your appointment goes ok tomorrow. No point in saying try to stay calm as i know it will be impossible!! But it is reassuring to read posts saying there are other reasons for the result to be raised. Fingers crossed for you x

nocake Tue 28-Jun-11 21:59:33

Hi Barbie
When DW was pregnant last year they found a cyst on her ovary at the 12 week scan. It was about the same size as yours. They did a CA125 test which came back elevated but we were told not to worry because there are loads of things that can cause it to be elevated during pregnancy. DW was given a number of scans to check on the cyst then referred to a consultant. The conclusion was that it was endometrial.

Since giving birth the cyst has reduced but not disappeared. It has never caused any symptoms so the doc isn't going to treat it, because there's no need to.

The chance of your cyst being anything nasty is really small and you shouldn't worry about the CA125 test as it's really unreliable when you're pregnant. Edometriosis makes it even more unreliable. Tomorrow they may scan you again to get a better view of the cyst. They'll be checking the blood flow and trying to see what's inside it. That will give the doc a better idea of what it is and if it needs treating.

barbie1 Wed 29-Jun-11 04:00:35

No sleep last night, back to worrying so much im making myself sick sad

I also started spotting last night, I'm sure this pregnancy is doomed.

4.5 hours until the hospital

Spotting is prettyy common, particularly if you have had an internal scan.
I know you are terrified but the likliehood is that your baby is fine.

Agree with everyon else thay C125 markers are not that reliable in pregnancy. Sounds like your doctor needs a bedside manner refresher course!

MumOfStan Wed 29-Jun-11 08:03:24

Barbie, I am also in Dubai. Wish I could be there with you to provide a friendly (very un-mumsnet hug in RL. Let me know if you need anything. I understand how hard it is to be so far away at these worrying times. Wishing you all the best for today. x

25goingon95 Wed 29-Jun-11 10:33:48

Thinking of you barbie, hope your appointment is going ok.x

barbie1 Wed 29-Jun-11 14:18:32

Thank you all, i have good news! smile

Baby still there, even after the heavier bleeding. Heartbeat and everything!

My doctor was wonderful, she scanned my and told me right away the cyst looked benign and didnt look worrying at all. She fears it will burst some time soon so i will get some pain and bleeding but have her personal number to call her right away.

I will be monitored fortnightly until 20 weeks (praying i get that far) and if it grows i will have it removed around 16 weeks.

My ovary looks a little dodgy so will have to have that monitored too.

Thank fully the last 4 hours have been much better than this time yesterday!

mumofstan thank you for your kind offer, nice to see fellow expats smile

mejon Wed 29-Jun-11 17:26:36

So glad you've had good news. Wishing you all the best for the rest of your pregnancy.

25goingon95 Thu 30-Jun-11 13:20:28

Brilliant news!! Now take it easy, time for some serious pampering and relaxation after all that worrying! smile

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