Potential pancreatic cancer, help please!

[paige_smith]

Hi all I am brand new to this forum so bare with me please.

My mum has been having various symptoms over the past 7 months and I feel helpless and worried. She started off feeling dizzy and off balance then started with mid left back pain then started having left abdominal pain. And within the past few weeks she started with bad migraines and going to the toilet more and more. She’s had many blood tests, ultrasound, CT scan and endoscopy. The consultant noticed something on her liver on the CT scan but said it was nothing to worry about but never chased it up but crossed her off as being okay. So she went back to the GP and he re referred her and she saw a liver surgeon and he’s booked her in for a ultrasound and a colonoscopy. She is thinking about booking in privately for a endoscopic ultrasound, is this a good idea? As everything is taking so long on the NHS. Just feeling really helpless at the moment but I have taken comfort in the scans coming back okay.

[Michaela1]

I would have thought the CT scan would have shown up anything worrying. You can get someone else to look at the CT scan to give you a second opinion? Or just pay privately for a second opinion scan?

[Veema]

Firstly, I'm sorry you have got all this worry. It's awful when a loved one is poorly and you just can't get to the bottom of why that might be.

I would suggest you give the nurses a ring. You can find their number at the top of the page, they will be able to point you in the right direction.

Personally, I would have thought a problem with the pancreas would have shown up on either the ultrasound or CT if not both. With regards to the liver, some people are prone to small cysts, so whatever the consultant saw may well be something you don't need to worry about. That said, I'm by no means a medical expert, so can quite understand why you would want more tests.

Try not to worry. Give the nurses a ring.

Vx

[PCUK Nurse Rachel R]

Hi Paige

Just thought I would briefly say Hi, I'm Rachel, one of the Nurses here at the charity on the support line.

I am sorry to hear that you are going through such an anxious time at the moment with Mum.

Please don't hesitate to call or email us so that we can go through things together if this would be helpful for you - details are in the signature below.

Best wishes,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[paige_smith]

Hi All

Since my last post my mum went for another ultra sound where the girl examined her for half an hour!! Her mum and Dad both died from pancreatic cancer, this was said after my mum told her her main worry of what it could be. The girl said the ultrasound was clear and she couldnt even find the spots on her liver that were flagged up on the CT scan, is this normal? My mum has booked in for a private MRI scan of her whole body and head.

I feel like I’m living in a nightmare if I’m honest.

Thanks guys xx

[toodotty]

Hi Paige Smith,

Fully get where you are coming from and just accept that ultrasound scans and blood tests are not 100% accurate. Before being diagnosed with stage IV PC, I had had about 6 weeks of blood tests, ultrasound scans and various GP appointments and everything was coming back clear. Medication didn't help, just made me worse, in the end the GP had run out of ideas of what to try next. Instinct told me it was gastric related and I asked to be referred to a private Gastrologist, I knew it would take too long on the NHS. It was even hard to find one quickly and I had to travel to see him. However, he saw we within one week, and within 2 I was diagnosed with PC. Had I not gone down this route I do not think I would be alive today as my symptoms progressed really quickly.

So in answer to your questions, my ultrasound scans (I had 5 in all) showed that everything looked absolutely fine from the pancreas, liver, spleen and gall bladder, despite me having a 3cm tumour in the head of the pancreas and small liver mets. All blood tests were fine, no results on the cancer markers, A&E diagnosed constipation after 8 hours of tests.

Also scanning equipment (CT or MRI) is not sufficiently refined to pick up tumours below a certain size, so they may be there but not yet visible.

If you have the funds get your mum referred to a specialist, your GP can do this for you and may know of suitable ones in your area.

toodotty

[paige_smith]

Hi there thank you for your reply

My mum was referred to a gastroenterologist who sent her for a CT scan and an endoscopy which came back clear apart from something on her liver but he wasn’t worried about that and signed her off and we haven’t heard anything since. She has now managed to get re referred to a liver surgeon who’s sent her for the ultrasound and colonoscopy. Ultrasound came back clear and she’s yet to have colonoscopy but she is thinking about paying privately for a MRI scan. Do you think it’s a good idea?

[paige_smith]

Also my mum has been having these symptoms for 7 months now, surely if there was a tumour wouldn’t it have grown by now? That’s what I keep telling myself to keep myself sane. Sorry for all the questions xx