Hi-I have also just recently been told the devastating news after my blood results came back as high.. I had an mri/ ct scan pretty much straight away where they found a tumour on my left ovary also bowel and adrenal problems.. I'm so sorry.. please don't worry.. I know it's very difficult... and scary... I'm here if you need to chat..xx

Hi, 

Can I ask how long your waited for diagnosis after scans?

I had a scan on 9/3 and was told I had a very large ovary and other things going on in my womb. 11/3 was called to the doctors who said it was a fast track 2 week referral. Had bloods 14/3, which was ca125 level 44. 15/3 saw gynaecologist who had a look with camera and said many polyps and took a biopsy. Also referred me for an mri which I had on Friday. I thought that was it and would then await an appointment for results but have had a phone call today to say I now need a ct scan tomorrow. Everything is moving fast but am desperate to just know what's wrong and was wondering if I'd know by the end of this week. 

I used private healthcare through work but I don't think even that has helped speed things along. The consultant said something about going into the two week cycle. Hope you get the results soon. 

Hi Just-Mum

I'm in the south west. Apart from the first scan all my appointments have not been via letter. I've had a phone call from the hospital asking me to come along on the same day or making an appointment for the next day x

How is everyone doing? I had an eventful week with a trip to hospital due to the fluid around my abdomen, I was released but have to go back if any deterioration in breathing or further increased heart rate. Still no results though, have that to look forward to one Monday xx

Hi AcW,  wow that does sound eventful.  
Still no news here either, just waiting around.  It does mean we can get some work done on the house though, which is always a positive.  
I did have my first post lockdown haircut this week though, the first for two years! Trying to get ahead of the game a little, thinking about post op and how easy it will or won't be to wash my hair so decided it had to go, went from nearly waist length to a jaw length bob, which is much easier to deal with already, I should have done it ages ago.

Take care xx

Hi- im in the northwest area ... xx

How is everyone? I have my results tomorrow and I'm struggling. I can't get out my head that I might have this horrible disease that will prevent me seeing my daughter grow up. My ascites is crippling me too x

Hi AcW,

No results for me yet, but I have a CT scan booked for 7th April.  I've struggled a bit this week, but I'm trying not to focus too much on it, which is really hard, but it won't change how long I still have to wait or what the results will be.  I worry more about the procedure than the results, cos I can't change them in any case.  I'm just dealing with one day at a time as best I can.

See if you can find some relaxation techniques that you can practice if you think that will help.  I know we're all different and cope with things differently but I hope you can find something that works for you.

Take care.

Hi AcW, I've been thinking about you all day.  How did it go yesterday?

Ahh thank you for thinking of me. I have a mass on my left ovary and swelling and a large amount of ascites. I have been referred now for drainage of the ascites and a biopsy of my omentum which is happening on Thursday (after a lot of chasing today and a lost referral!). I'll be glad to lose this fluid as an so uncomfortable. The doctor mentioned a major operation but wouldn't really say much else until these next tests. My husband and I are at different ends of the worry spectrum with him acting like it will all be ok and is probably a fibroid and me thinking I'll be lucky to see Christmas. I know I am thinking the worst but when you feel ill and uncomfortable it's quite difficult not to. I am definitely struggling but not really sure what help there is during these unknown stages. My parents have been away and know nothing of what has been happening (it was their 50th wedding anniversary and after lockdowns and my dad having a bout of pheumonia I wanted them to enjoy two weeks in the sun). I think having them back will help me although worried about worrying them! (I get my worry scale from my dad!).

how is everyone else?  Xx

Hi Ladies,

I've also been wondering how Tink is getting on.

 I'm still at the waiting for tests stage.  As already mentioned, blood tests are back, zero markers for bowel cancer, CA125 reading was 83 which, although elevated, when you hear of some results being in the 1000's, it doesn't seem too bad.  My ovary is reading about 10cm. I'm still getting some bleeding, but not a huge amount, which was why I pushed for a referral in the first place as I'm about 9 years post menopause. CT scan is booked for 7th April and then I suppose it's another waiting game while the results are reviewed.

Can I ask, has anyone considered asking to be tested for the faulty BRCA? gene if cancer is diagnosed? My daughter has asked that I request a test so that she at least knows if this is a fluke or if she is at greater risk herself.

Sending positive thoughts to you all.

JM

Hi Ladies,

I've also been wondering how Tink is getting on.

 I'm still at the waiting for tests stage.  As already mentioned, blood tests are back, zero markers for bowel cancer, CA125 reading was 83 which, although elevated, when you hear of some results being in the 1000's, it doesn't seem too bad.  My ovary is reading about 10cm. I'm still getting some bleeding, but not a huge amount, which was why I pushed for a referral in the first place as I'm about 9 years post menopause. CT scan is booked for 7th April and then I suppose it's another waiting game while the results are reviewed.

Can I ask, has anyone considered asking to be tested for the faulty BRCA? gene if cancer is diagnosed? My daughter has asked that I request a test so that she at least knows if this is a fluke or if she is at greater risk herself.

Sending positive thoughts to you all.

JM

Hi all, 

I'm still anxiously waiting for an appointment to discuss all the results from biopsy, mri and ct scan. Was told 2 to 3 weeks and the 3 weeks is next Tuesday so anytime

Hey,

Just wanted to come on with a positive story.  I was in your shoes after they found elevated CA125 when I was in hospital in Nov with sepsis.  It was just over 100.  Repeat tests showed it increasing and I think it is now over 200.  I also had a lot of the symptoms that are associated with OC.  

I had an ultrasound first which was clear and then a CT which was also clear.  I had a very thorough team and the consultant and MDT then booked me for a laparoscopy to have biopsies and a proper look around which happened 2 weeks ago.  ALL CLEAR!  I found out last week all the tests were good and am only just starting to really allow myself to dial down the worry.  

I have no clue what is causing the CA125 but I am now under GP care again to look into it.  

So - it can be good news.  And I hope it is for you ladies in that torturous waiting stage.  xxx

So today I went in for my biopsy of my Omentum and ascites drainage.....they took out 10 litres!!! No wonder I wasn't feeling well! Now the waiting for results starts over again. I just hope I get results and a plan before the ascites comes back. 

Sorry I didn't answer about the genetic testing question but yes I am going to ask for it as my maternal grandmother had breast cancer at a fairly young age (she survived it and had a good life for many years and lives into her 80's!)