Ascites/Advanced symptoms

[Anna2020]

Hi everyone,

Just looking for some support and advice really, to see if anyone's been through anything similar.

My mum had a CT scan on 6th August this year after being admitted to hospital with jaundice. (She'd had some blood tests done with her GP who suspected gallstones. Once they received the results they then referred her straight to a&e).

Once she had the CT done, she was told just a few hours later that it was very bad news and had a mass on her pancreas. He said he was almost sure it's cancerous.

She then had an ERCP on 10th August and had a 7cm stent fitted. They also tried to take some brushings for a biopsy which was unsuccessful.

We then met with the consultant on 13th August who said he suspected the cancer was locally advanced but that's all he could tell us for now because of the unsuccessful biopsy and would refer her for an EUS for another biopsy. We were very frustrated that our questions couldn't be answered.

On the 21st August I had to call an ambulance out for my mum as she had a very high temp and heart rate. She was treated in hospital for sepsis and also developed ascites, where she had 10L drained from her. She also had her EUS done whilst she was there. She was discharged this Tuesday (1st Sept) after a 11 day hospital stay. Her discharge notes told us more then the Drs ever had.

She's sleeping a lot, she's hardly eating, and when she does it normally comes back up after a couple of hours. She's struggling with diarrhoea also.

We now have to wait another week before we've got an appointment with the consultant for the biopsy results from the EUS and also the liquid that was drained.

We feel a bit in limbo, we've been given no answers, no contact details for anyone if she's not feeling well and also what other symptoms to look out for.

We've been reading a lot online about ascites and how it's an advanced symptom of the disease. Has anyone had chemo after developing it? What happened to you/your loved ones after developing ascites? We're not sure if we need to prepare for the worst.

Sorry for the long post, any advice is greatly appreciated.

Anna x

[PCUK Nurse Jeni]

Hello Anna,

Thank you for your post on the forums.

I am sorry to hear about what is going on with your mum - I am sure this is an anxious time for you all, with a lot to take onboard.

Anna, there is a lot contained here in your post, and I will reply to you via email as its easier when there is a lot of information.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[taoofpooh]

Hi Anna. I too developed ascites after my PC diagnosis. Your mum is fortunate in that she didn't have to wait too long for the drain. I had a couple months with abdominal fluid before I finally got ( demanded) CT and drain. My ascites came back quickly and I had around 10 drains in total. It isn't pleasant. I started on Folfirinox and after around 8 rounds my ascites subsided. Everyone is different, hopefully your mum's will subside quickly when she starts chemo.

Hugs.

Paul.