Just been told I have Ovarian Cancer

Hello Marsvin

Welcome to the Online community. I am sorry to see that you have been diagnosed with ovarian cancer and are waiting for an appointment to discuss this with your doctor. I see that you are trying to contact someone but that you have not been successful. 

Are you able to contact your GP regarding the fluid in your abdomen?

It sounds really uncomfortable and concerning and I can understand why you are feeling low. I just wonder if you were to call your doctors surgery, you would be able to either get some treatment or whether your GP may be able to contact your hospital directly for advice. You can explain that when you are calling no one is answering or returning your calls and that it is now getting painful.

My GP did this for me when I was recently diagnosed and was waiting in the system. She was able to look at my notes and directly call the consultants secretary. It may be worth a try.

Jane

Thank you Jane. 

Hi

So sorry to hear that you’ve joined this awful club.

I was diagnosed last February. The fluid is called ascites and is horrible. I had it and in the end had a drain to take it away. However it does return and for me it was starting chemo that got rid of it totally. How long is it till your appointment for results?

I also has ascities badly I had it drained 3 times I  think but definitely twice, I really don't want to frighten you but get help quickly as mine moved from my abdomen to the cavity around my lungs and I ended up on 100% or 15litre of oxygen,  so please keep getting on at your gp, have you been given your rapid response number yet if so ring it.

You will suffer enough without being left with no help

Get in touch on here if you need any help or advice 

Take care xx

I have only just received the number on Thursday after 4 weeks  only to be told sorry on holiday So I managed to find the number of the nurse who runs X-ray who went above & beyond & I am going on Monday at 8:30 to have it done. 

I went on Thursday only to be told the biopsy I had the week before had not worked & I have to have another one. I know nothing more than I knew on 6th April I.e “looks like you have ovarian cancer got to work out if chemo first or op first” That’s it  No start date for any treatment, no stage, no grade. Feeling very much in the dark. Am I being unreasonable?

Hi

That does seem a long time to be no further forward and not have an exact diagnosis!! When I got my diagnosis it took 51/2 weeks before I started chemo I remember. It’s a dreadful time for you and I wish I could say it gets better but there always seems to be something popping up. They won’t rush to give you a drain but I’d start complaining because by the time e they do it you could be feeling quite bad with it. Only advice is to keep ringing and hassling them for answers or when you can expect them

x

I was the same, my biopsies never worked either, I don't think I got a stage or grade to.start with bit I also didn't ask questions cos I didn't really want to know the answers tbh, I just kept saying well I'm.not that poorly but actually in the April.i was told there was nothing they could do for so i was very ill indeed bit If I didn't admit it it wasn't happening I was in hospital for the whole of April.

You definitely are not being unreasonable 

You need to know so u can set things straight in your own head and then try and explain it all.to your family.

My family was distraught with worry cos we weren't getting answers as we wanted them.

Try and get an appointment with the oncologist consultant abd ask questions and get answers xx

Hope you get what u need xx

Update. Today 20th June and it has been a fight and a half to get things done. A very long frustrating story of poor communication! from the gynaecological department.

  I finally has a biopsy on June 9th (told on April 6th it looked like i had ovarian cancer). Just been told I have an appointment on Thursday 22nd when they are HOPING to tell me the results and treatment plan. As far as information goes I am still no further on than 6th April.

The fight to keep my mind from going down long dark pathways has been awful but so far with great friends and husband support it's working. I feel so frustrated and abandoned .

In contrast my friend was diagnosed with breast cancer 4 weeks ago & is coming home from hospital today after her op.

I dread to think who i might scream at on Thursday if i don't get info. I am in Wales and their target is 62 days from being old until start of treatment, well that's a bust. Please keep your fingers crossed for me.

Hi Marsvin

Thats a terrible long time to not still know what your up against!!!!! Fingers crossed you get some answers soon and praying things are early stage for you

x