Scared of diagnosis

[Acw123]

Hi, I’m looking for some positive stories. 6 weeks ago I started feeling constipated and bloated, dr prescribed some laxatives and also arranged a blood test which came back with a CA125 of nearly 400. Since then my abdomen has got bigger with what I suspect is ascites and I’ve lost my appetite. I’ve had a CT and MRI scan but have another week for the results. I have a 5 year old little girl and am petrified I won’t see her grow up 😢 I know I need to snap out of this downward spiral and be more positive but finding it so hard and just keep thinking the worst. Thank you x

[Jingles6]

Hello - I was exactly the same as you and was told I had ovarian cancer. Keeping positive I am sure is what got me through and after hysterectomy and chemo I am in remission. I was afraid of what was in front of me but excepted I couldn’t change it but beat it. I wish you luck with your results and sending positive vibes to you.

Jane

[Katmal-UK]

Hi sorry you are possibly facing this diagnosis. I was diagnosed in 2007. Bear in mind that OC is treated as a chronic condition and in the time since I was diagnosed there have been so many new treatments and more treatments coming along all the time. It might sound a daft thing to say but try not to worry, concentrate on the here and now otherwise you will miss the present worrying about what might happen in the future. I hope that makes sense. Please let us know how you get on. Big hug, Kathy xx

[Saintgermain]

Hi Acw123I was in a similar place around this time last year I was struggling with constipation luckily I had a proactive Doctor like yourself that immediately sent me for a CT Scan and a Ca125 test many times the diagnosis for OC gets put off as IBS or some other chronic condition that it can mimic so by the time the patient actually gets the correct tests the OC is in an advanced stage it’s very good that your Doctor is on top of it and the symptoms are fairly recent I had a successful debulking hysterectomy once they remove the tumor they will stage and grade it my CA125 before surgery was 4300 I went thru 6 chemo treatments to hopefully kill any rogue cells it’s a very hard time for you right now very surreal and all those feelings are justified I try to look on the sunny side of the street and not dwell on all the what if’s which isn’t always easy I finished my last chemo October 2021 my CA125 has been hovering around 6 my CT scan at present is clear I actually just had robotic hernia repair surgery last week can happen post hysterectomy. My tips try to not over read things on the internet everyone is different you’ve come to the right site these gals are great there’s a lot of Survivors out OC treatments have come a long way please lean on us for support I will keep you in my prayers Faith of a mustard seed!

[Boot1947]

Dear Acw123, if it helps at all (we are all different and our journeys are weird and not always wonderful!), I was diagnosed with 3a OC - CA125 was 3,900 - back in 2014 and am still here at 75, generally enjoying life despite the odd health niggle. There have been a lot of developments in treatment since my diagnosis, so not all is necessarily doom and gloom. Please keep us posted - we’re all here to support you. Virtual hugs, Deb x

[delia2]

Hi. I know you’re terrified but you may not have ovarian cancer. The elevated CA125 could be caused by another problem. I hope it’s something else but if it is OC it’s not a death sentence. There are new treatments being developed all the time. You should try to get genetic testing because it’s helpful in determining treatments. Xx

[mizpurple]

Hi acw123 - We're all here for you, hoping for the best, encouraging you when things get hard. As others have said, OC can be eradicated by surgery if caught at an early stage, or lived with as a chronic illness for many years after diagnosis. If you need surgery and chemo, we are here to say you can get through it and get back to living. You are stronger than you know, and you have a great motivator in your little child. Wishing you all the best! Deb in Colorado

[Acw123]

Thank you all for your responses, you are all so kind to take the time to respond and I really appreciate it and keep revisiting your comments.

[ritabon]

It's really difficult isn't it, the waiting? Do try to live each day as best as you can and not to over think what may happen. I know its easier said than done though. Thinking of you. Xxxx

[Acw123]

I had a catch up with the consultant today, there is a mass on and swelling of my left ovary. The next steps are going into hospital to drain the ascites and do a biopsy of my omentum? She was arranging it for this week and seemed to be treating it as very urgent.

[FlowerRose]

Try (!) not to get ahead of yourself. one thing at a time. The ascites sounds the most worrisome to me, but one thing at a time, step by step. Don't diagnose yourself, but self advocate until you feel you're being listened to and taken care of.

[Mellucy]

Hello, My Daughter was originally told in December 2021 that she had ascites, here she is now on the road to recovery, i am SO proud she is telling her story please try to stay positive xxx tiktok.com/@chanellelmason

[Acw123]

So I had nearly 10 litres of fluid drained, they took a biopsy of my omentum and the fluid and both came back as NOT malignant. The consultant seemed relieved for me and I was so relieved too. I’m waiting for an MDT team to look at my case and agree next steps but she said I will still need the mass removed from my ovary with surgery (that bit doesn’t worry me). They may want me to see a gynae oncologist before surgery or may not. I think I should take all of this as good but after 4 days of the good results my worry and Googling is starting again!