I'm new - Chronic Pancreatitis - Help and trying to get a diagnosis.

[BexBoxer]

My father has been suffering with chronic pain (about year!) & we suspect chronic pancreatitis - hopefully not a cancer diagnosis - but how long does diagnosis take?

His symptoms have been stomach bloating, abdomen & stomach pain radiating to his back, that worsens as the day goes on, reduced appetite, nausea, change in stools, weight loss, heart palpitations, heartburn, fatigue & tiredness. He has a history of diabetes, heart problems (has a pacemaker), debilitating back pain & most recently, has been diagnosed with sticky blood. He also suspects rheumatoid arthritis but hasn't even begun to consider investigation as he is just too tired from the abdominal issues he is experiencing.

He has had 2 CT scans which his GP reported as normal. He has since had an endoscopy, which was normal too. However, they reviewed the CT scans, and immediately identified a gallstone, dilation of the distal main pancreatic duct, bulkiness of the neck of the pancreas and atrophy of the head of the pancreas. He is being discussed in the MDT but has been referred back to the GP. They have also put him in touch with the cancer care nurse (presumably regarding pain relief as he does not have a cancer diagnosis!)

Can anyone out there help as to where we should go from here as we're losing faith in the GP as they keep missing things, and not following up on anything.

[Jakesgirl]

You need to see a GI. Your next step should be an endoscopic ultrasound.

[BexBoxer in reply to Jakesgirl]

Thank you. Have just got the news via a phonecall today that there's a cancerous lesion on the pancreas. They're hopeful that it's operable but it will depend on the Pep scan......which hasn't been scheduled yet!

[catterboxcharlie in reply to BexBoxer]

I dont obviously know where you live but if you can get referred to one if the hospitals that do whipple operations, I think there are only about 10 in the country, then hopefully diagnosis and treatment will be more cohesive. I had a whipple 10 years ago at Liverpool Royal and they were amazing and i have been good since. Got cyst out just before it became cancerous so I was lucky. Good luck to your dad x

[BexBoxer in reply to catterboxcharlie]

Thank you ❤️

[Deary63 in reply to catterboxcharlie]

Hi chatterbox Charlie

Just wondering what your symptoms where having a cyst on your pancreas?

As Iam really worried I’ve got something wrong with my pancreas

Sue

[BexBoxer in reply to Deary63]

Good morning,Learning from my dad's experience, I would visit th GP and be quite pushy. If you have had changes in stools, digestion, pains etc tell them about everything to get the referrals going. Keep chasing and don't be fobbed off with excuses. Good luck and hope you manage to get things sorted out.

[Deary63 in reply to BexBoxer]

Hi Bex

Just wondering how your dads doing ?

Sue

[catterboxcharlie in reply to Deary63]

Sorry for being slow to respond. I was going to GP for a long time with random symptoms but I generally just did not feel right. Itching down below was a very big problem along with sweating, feeling tired etc . They kept telling me it was my age, was mid 50s at the time!!In the end they sent me for a scan, the first of many but u was referred fairly quickly to the cancer unit at one of the few hospitals that do whipple operations. Looking back I believe I was super lucky.

Hope all goes well for you but DO NOT GET FOBBED OFF. If you dont feel well, keep going to your GP l. Good luck xx

[Deary63 in reply to catterboxcharlie]

Hi thank you for your reply, Iam feeling a bit better, but waiting on scan now of pancreas,liver and gall bladder..had a couple of stool test which were normal. Pain in tummy has gone off now! Might Be IBS my friends think 🤷‍♀️ I think because I lost a close friend with pancreatic cancer it’s on my mind …All the best

Sue

[catterboxcharlie in reply to Deary63]

Good luck. Keep following through until you have some answers x

[poppystorey]

Please please push for second opinion or speak to PALSat your hospital ,I suffered exactly what you describe for 4 years,telling me it could be other things ,WELLtreat other things then get one out of this pain ,then they noticed a mass could be seen in 2016 but not diagnosed till 2020,luckily a slow growing tumour and I am just on injection for life every 28 days.please don't be fobbed of if only to stop his pain God Bless you Poppy.xx

[poppystorey]

Hi just come across your post,it was almost like reading about myself, always getting normal results,but always left in pain and left to get on with it ,I now have neuroendocrine pancreatic cancer ,I was just wondering how things are with you ,and will add you to my prayers.do take care Poppey storey