Help please - what to ask the doctors

[Mrshappy]

Hi all - it's my first post on here. My dad was diagnosed with PC 2 weeks ago aged 68. We have not had a huge amount of information so far other than they don't think it's spread beyond the pancreas and is still small but surgery doesn't look like an option right now due to the proximity to a blood vessel. We are meeting properly with his team for the first time tomorrow so I want to know what should I ask please - the last 2 weeks have just been horrendous and we are all getting our heads around the news thanks all.

[Veema]

Ok, this sounds similar to my husband (but his tumour was large). I'll jot a few things below, some are just for you to think about rather than ask about.

You need to find out if there is the option of chemo, then reassess the situation to see if it's shrunk away from the blood vessel...my husband had 6 cycles of folfirinox and the tumour adequately shrunk to enable surgery. Is your father likely to be fit enough to tolerate the surgery if that becomes an option.

Where abouts in the pancreas is the tumour? If it's in the head of the pancreas, it may be that your father will need to take creon as this part of the pancreas is responsible for the production of digestive enzymes and it may not be functioning properly. If it's in the tail of the pancreas, it may affect his production of insulin.

How is his appetite? Does he need the support of a dietician...are supplements required etc.

He will be entitled to Attendance Allowance as pancreatic cancer is classed as a life limiting disease...this is not means tested. He will also be entitled to a blue badge which will be a godsend for hospital appointments.

You could ask about a referral to the palliative care team...you may not feel like you need them now, but once the referral is in place you have access to them whenever you need...we didn't find out about this until it was too late for us.

I wouldn't necessarily ask about the likely prognosis / timescales. I'm sure you've researched this and the current statistics are dire. Each person is so different in how they respond to treatment and it's almost impossible at this stage to give such information...it's pretty irrelevant anyway.

If I think of anything else, I'll bob back on, but have to go out now.

Good luck tomorrow, let us know how you get on.

Vx

[Mrshappy]

Thank you so much for the reply - some really good things to think about there. It's a really good point about the prognosis as I was so unsure whether to ask..... sadly my sister's mother in law died from this awful disease a few years ago so we know how horrendous it is or can be. Thank you for the kind words - I will certainly be back with more questions I am sure x

[Veema]

In all honesty, it wasn't that bad for us...my husband had two good years from diagnosis, he tolerated chemotherapy well and we lived a pretty normal life...it was only the last few weeks or so that were pretty rough. We obviously had the sense of impending doom throughout that time, but once you're in the throws of treatment, you tend to push it to the back of your mind.

Hopefully, as your Father's cancer seems in the early stages, there will be decent treatment options and fingers crossed, surgery.

Vx

[PCUK Nurse Jeni]

Hello Mrshappy,

Thank you for your post on the forums, and welcome to the forums, although, understandably, not a place which you might like to be.

I am sorry to hear that your dad has recently been diagnosed with pancreatic cancer.

By now, you will have had the appointment with your dad's team - I hope that this went well, and that you have more information as to a plan of care for your dad. I am sure that Veema's questions were useful in terms of some questions to ask.

Please do not hesitate to contact us should you require any further information about anything - the contact details are in the signature below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707