Hi new here and first post.I've been having odd weird symptoms for at least a year,low left side abdomanal pains,belly swelly,constipation,wind back Paine,indigestion eventually went to the Dr who suggested a ca125 test and said shed book me in for a scan ,I had the test and the Dr rang me the day after insisting on seeing me,she said it was raised and I'd to ring the scan people and say I needed a urgent scan,this apparently ment I'd be seen In 4 weeks.I'm still waiting I go Sunday. Its been so scarey I'm sick with worry.I've also started to feel breathless when I do stuff,yesterday I fealt so week I thought I was going to collapse. I don't know what to expect what will happen.I'm trying to be brave to laugh it of to appear carefree but I'm not.Terrified that nothing from now on is ever going to be normal again.
Ca125: Hi new here and first post.I've been... - My Ovacome
Ca125
Hi Polly welcome to this forum nobody ever want to have to join. That said it is so supportive and everyone is brilliant at giving you advice and tips
These early days before diagnosis etc are terrifying and everything will be going through your mind! It’s good you have your scan on Sunday and after that IF there is anything of concern make sure you get referred to a gynae oncologist. Things will or should happen quite quickly so you will feel caught up in a whirlwind!
Your breathlessness May be due to your anxiety levels going through the roof but if you are at all concerned then don’t hesitate to ring your GP straight away and get it checked out properly!
I’m sorry your feeling so scared but once you have all the results of your investigations and you have a plan of action for whatever it may be you will honestly start to feel a little easier!
It’s early days in the process yet so as hard as it is don’t let your thoughts run away with you thoughts are just that they are not facts xx
Please don’t google either as that will scare you witless the facts and figures on there are well out of date and everyone is an individual and not a statistic xx
Don’t hesitate to come on here and ask as many questions as you want there is a wealth of knowledge xx
Sending you a massive hug
Bev x
I've done nothing but google but have tried to stick to proper bonifide sights.Roll on Sunday then I guess I go from there ,it sounds daft but I feel it would be better if something obvious showed up I think I could handle that easier than the waiting ,watching .
Thanks for replying .
Aw bless you we have all done it! Even bona fide sites are generally out of date though x
The not knowing and waiting is the worse bit I agree xx
Well good luck for Sunday and let us know how you get on
Will do ,maybe I'll sleep better once I know more and yes maybe my breathlessness is anxiety.
Hi Polly
Sorry you are in this predicament...we’ve all been there and that scary waiting game is no fun at all.
As others have said, looking after yourself and not jumping ahead is important. My friend and I both went through this 3 years ago: she had fibroids, I had cancer...so try not to project. Having said that just because you have a scan booked doesn’t mean you can’t go to A and E if you feel really bad...if you are breathless they would much rather you went and got checked out..even if it turns out to be anxiety xx
Welcome Polly. This is such a stressful time, waiting for tests, waiting for results. Whatever shows on that scan is already there and worrying about it won’t make a bit of difference. But we can’t help it.
Try and distract yourself but if you can’t sleep or think of any burning questions in the middle of the night, as a group we span all time zones and someone is always on line to offer advice or just to show you’re not alone. We’ve all been through what you’re going through now.
All the best!
Hi Polly. Sorry you are worrying it's very normal but this as the ladies have said could be the reason for the breathlessness but let your Dr know, as for your 125 going up it could be for other reasons also,once you have the scan hopefully your Dr will be-able to put your mind at rest, as Bev said if you have any concerns make sure you see a gynae oncologist.
I hope all goes well take care ,Lorraine xx
Not wanting to worry you but it might be worth getting the breathlessness checked out in a and e - I had that and put it down to my anxiety and turned out to be pulmonary embolism - they can quickly check you over and do a clot scan if necessary - the waiting it terrible - is your scan a ct scan? Fingers crossed it’s nothing and it puts your mind at rest x
If the breathlessness continues, see your Dr ASAP because, as Coldethyl suggested, it could be pulmonary embolisms, as it was in my case over 19 years ago. It's not worth putting it off if you're the least bit worried. The breathlessness may just be nerves due to the worry of everything, but it's not worth taking a chance, is it?
Actually, they are right about getting yourself to A&E with the last several replies.
Before I ever thought about cancer, I was terribly sick and breathless, with a swollen belly. My GP was sweet, but they just don’t realise all the implications of these symptoms.
My husband called an ambulance and they whisked me into A&E, where the emergency room doc ultrasouned me right away. He could see that I was filled with suspicious fluid.
He sent me for a CT scan immediately
Not to scare you too much, but I was riddled with cancer, the fluid was crushing my lungs and my lungs were full of blood clots.
The cancer causes your blood to be sticky and it clots!
So: For now, let yourself be sick. Don’t try to live normally at this point. Rest and get that scan. Find out EXACTLY what your CA-125 is.
Googling for information about Ovarian Cancer is fine, if you read it critically and choose good sites. Macmillan has a great site and this Ovacome forum is extremely useful.
Treatments are hard, but they work and you just have to surrender yourself to them, but arming yourself with knowledge, bringing a significant other for support, getting your family engaged, it all helps.
Best wishes,
Laura
Hi...Breathlessness was my first sign of something not right..along with distended stomach. After an ultrasound scan , I had 9 litres of suspicious fluid drained..and discovered a tumor 20cms ..I thought wieghtgain. Surgery is 18th Oct 2018.
Just to put a slightly different point of view... Of course, you should go A & E if your breathing is compromised.
But many people have raised Ca125 for benign reasons. Endometriosis, infection etc. Mine was 130, because I had a large tumour which was rubbing against other organs. It was not malignant, but it was squashing one of my lungs and giving me indigestion.
At the moment, you don't even know whether you have a cyst. So try to take it one stage at a time. If your GP said you might have to wait 4 weeks, it's unlikely she's put you on the 2 week pathway. Have you been referred to a hospital?
Nevertheless, my GP gave me valium and a low dose anti-depressant to help me cope. I couldn't eat after my first hospital appointment. It made all the difference. I hadn't had any scans at that point, but the consultant could feel how big my tumour was. And it was OK in the end!
Good luck!
Hi Polly, welcome to the site you'd rather not be on.
The waiting game, what can we say about it, it's awful, the worst part. The time is nearly here though and you'll get the results soon. You may be pleasantly surprised but if not there is plenty of treatment to help you and you'll get through it.
I'm one of the ones that has been clear for 5 years now and I was diagnosed Stage 3C. There are others that are Stage 4 and still here. It isn't necessarily the end of everything. A lot of us still carry on as normal and go on holidays. Since my diagnosis I've seen my daughter marry and have a son. She should have had another one on Tuesday but we're still waiting for him to join us.
There are many positives and it's so easy to concentrate on the negatives it's only natural. We're all here to help you get through it and hopefully you have a good family around you.
Let us all know how you get on. We're wishing you all the best. Zena x
Had scan today, ran ultrasound over abdoman once then stopped and said I need a internal one.Long story short referred to gynea.I've to call gp next week
How are you feeling after that Polly?
You need a gynae oncologist referral if there’s anything suspicious not just a general gynaecologist so ask your GP to do this for you x
How’s the breathlessness?
I'm fine sat down if I'm up and about,I have a dog needs walking,then I'm struggling ,I feel very tired and short of breath.I'm going to ring the go today see if I can get the Dr that originally saw me to give me a call.I had a bit of a wobble last night a little cry but I've decided crying isn't going to help the situation not really I need to focus on getting whatever's amis sorted. I am very worried though
Thanks for everyones responses it really helps.
Raised ca125 very scared 
Hi I recently had a CA125 test and a transvag which showed up a mass
CA125 levels 
raise ca125 
Rising CA125 but clear scan. 
