Advice please

[janem]

My dad has just been told he has pancreatic cancer and has an appointment in 2 weeks at the specialist centre for an EUS and has been told that they might do a biopsy as well. I guess this will tell us how advanced the cancer is and if it is operable. Can anyone tell me how long on average it takes to get the results or if we will be told at the time.

[InfoForMum]

Hi there,

Sorry about your Dad's diagnosis. Guessing you're in a whirlwind of emotions and research. Our situation might not be typical, but our consultant gave us results 3 days after the EUS biopsy. Mum had a stent fitted to sort her jaundice via endoscopy and a brushing of the place were the tumour was narrowing the bile duct was taken at the same time. That kind of tissue sampling (think it's called brush cytology) is only 30% likely to be conclusive (it wasn't in our case) so later she had another ultrasound guided endoscopy where they did a fine needle biopsy (FNA) of the actual tumour. That's the one we got back after 3 days.

The best advice I can give is to ring the nurses on the support line. Between them they have contacts at most specialist centres in the UK and will have dealt with enough queries to let you know what's an average wait. Beyond that push, push, push for updates if you think feet are being dragged. Don't be scared of asking the hospital switchboard for the consultants secretary and badgering more or less gently depending on how it goes.

If your dad has been losing lots of weight and having an upset stomach I also recommend asking your docs to prescribe Creon. The stent (if that's what you mean by EUS) will sort out bile flow and resolve jaundice, pale stools, dark pee, but his stomach probs may well be down to ducts for pancreatic enzymes also being compressed in his pancreas. Those enzymes are needed to digest fats. That's what the Creon is. Replacement Enzymes. Something else to discuss with the Nurses. Some docs are reticent to prescribe them, but they shouldn't be. They're not toxic (no known overdose level) and for most folk make an immediate difference to food absorption and helping with related stomach probs and weight loss.

If that's not relevant then please just ignore. If you are interested in my Mum's diagnostic journey you can find it here - http://forum.pancreaticcancer.org.uk/viewtopic.php?f=9&t=1137. She got the initial PC diagnosis in mid August, needle biopsy 3rd September and started Chemo on the 26th September. Her's is a 2.5cm tumour in the tail of the pancreas with some vein and arterial involvement, but no spread, so if we're lucky she might still have a crack at surgery.

More generally take care of yourself, post any questions you have and ring the nurses. There's a massive weight of patient and carer experience and you should get quick replies.

Sarah

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[janem]

Thanks for your reply. I was on the phone to my dad just now and read it out to him so he has a better idea.

He had a stent fitted about 10 days ago at the local hospital which is improving his jaundice and he is eating better but he thought that the creon might help. The main reason I wanted to know is because the doctor said that he might be able to have an operation he is telling everyone that he is having an operation despite the macmillan nurses telling him not to rely on it too much as if it isn't possible he will have a big let down. He also phoned up the macmillan nurses and the doctor at the hospital as 'he is meant to be having an operation at the specialist centre and has already had an endoscopy.' I have managed to explain the difference between the endoscopy and the ultrasound he has had and the eus he is booked to have and thanks to you the timescale for the results as he wanted to take a hospital bag up in case they kept him in to do the operation. I didn't think I could face the hour and a half journey each way if he wasn't prepared for still not having the whole information and maybe no operation date

Thanks for replying so quick

[MSH]

It takes a few days for the biopsy to be reported but it isn't always easy to diagnose. I had 2 EUS's together with brushings at the time of the stent all of which were indeterminate.

It is the CT scan which is more important when deciding whether or not surgery is an option.