Tumour size

[WilliamS]

My father has recently been diagnosed with a 34mm x 28mm PC tumour which is described on his hospital discharge letter as "locally advanced". We haven't been given any information about staging or treatment. Does this mean the tumour is likely to be too advanced for surgery?

He has been prescribed Creon 80,000 with meals and 40,000 with snacks but is unable to eat solid food. He is having soup and Ensure but has lost about 1 1/2 stone in 3 weeks. Any advice?

How long have others waited before hearing about treatment? Any information appreciated as this is all new and out of the blue. He had no symptoms at all until being admitted to hospital with jaundice, then a stent was fitted to the bile duct. Thank you.

[Didge]

William, my bf also had locally advanced tumour but was operated on by a brilliant surgeon at one of the specialist centres (please email me for details if you want, we are not allowed to name hospitals). The fact is many medics are of the opinion that he would simply have been sewed up again by a lot of surgeons so it is vital that you get an opinion from a specialist hospital surgeon as soon as possible. head of the pancreas (which I assume is the case from the jaundice) is often inoperable because of venal invasion but you need to get that opinion as soon as possible. Sometimes it is possible to shrink tumours to become operable but am not sure how that or if that applies to locally advanced. Good luck! Let us know how you get on.

[Didge]

I should have also mentioned that the specialist hospitals are listed on this website.

[sandraW]

Hi William, welcome to the forum, I agree with Didge that its not necessarily about the size but what else is involved. My husband too was operated on in a specialist centre, I hope you get some more news soon, take care sandrax

[PCUK Nurse Dianne]

Hi WilliamS,

Welcome to the forum, and i am pleased to see you have had some responses already, which is what you will find with this very supportive and friendly forum.

Locally advanced indicates that the tumour is in an area that most likely involves the blood vessels that run behind the pancreas. There are 3 blood vessels, 2 of which are veins, and one is an artery, and surgery involving these blood vessels can be complex. There are some specialist centres in the UK with Consultant Surgeons who are expert in managing this surgery (please feel free to contact us and we can give you a list of contacts and hospitals).

We can give you more information about accessing specialist centres and where to go to now, and also about the managment of the nutritional issues that you mention. Rather than intervene with the suppport you will receive from the others on the forum i will email you independantly in the morning and give you some further information if you may find this helpful.

I am sure other 'forum family' members will be able to give you some helpful tips and encourage you all to do so as usual.

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

[WilliamS]

Thank you Dianne. I look forward to receiving your email. We are at our wits' end not knowing what to do, especially about the extreme weight loss.

[Sueoliver]

Hi William my Mum was diagnosed last year with inoperable PC. This was also a shock to us. I would advise that you ask as many questions as you can. My Mum had a stent fitted and actually put weight on afterwards. She eats soft things like scrambled egg, jacket potato, spaghetti hoops etc! She loves chocolate! I buy her full fat milk especially the gold top if you can get it and she puts cream on some of her foods. The M and S individual sponge puddings are good as well if your Dad could try them. If he can't eat any solid food then soup and fortijuice or fortisip are good.

Hopefully you will see a specialist at the hospital who will beable to explain everything to you. Don't forget to ask questions!

I hope you get an appointment soon and some help.

Sue

[WilliamS]

Thank you all for the information and support. I've just read a patient's story on the pancreaticcanceraction.org website about someone who had a 4cm tumour surgically removed. On the other hand, a friend of a work colleague was due to have a Whipple procedure for a 1cm tumour last week but when the surgeon opened him up it was found that a blood vessel was invaded so the operation could not be carried out. So we shall continue to hope and pray until we receive the results of Dad's Fine Needle Aspiration biopsy.

[Didge]

Yes, it's not the size so much as the position although smaller is better! my bf's was about 4cm. When will you get the results of the biopsy? If you are not already at one of the specialist hospitals I would urge you to ask for a referral now, not wait for the results. We asked for one as soon as the local hospital showed a tumour on the scan. Good luck and let us know what happens. as you may have gathered, sometimes you have to chase a lot to get things moving and with pc speed really is important!

[WilliamS]

The biopsy was carried out on 30th March 2015 at the specialist centre in the North East but they have said he was just referred to them from our local hospital "for advice" and that he remains under our local hospital. On the day they were told the results would be available in 7 working days. My parents called the hospital on Friday to enquire but were told it could be 10 working days so hopefully should know more by the middle of this week. I hope that he can be referred to the specialist centre for any treatment etc.

[Didge]

Well I am sure the nurses could advise you better, but I think you want to ask to be referred for treatment to the specialist centre, not just advice and there is no harm in asking for that to be put into action now rather than waiting a few more days. I suppose if the local hospital have asked 'what is this?' the biopsy will show that and that is all that the specialist hospital have been asked to do at this stage. For our part, because we didn't want to go back to the local hospital, as soon as the GP got the scan results my bf asked to be referred to a specialist hospital and they decided that whatever it was it ought to come out as it was deemed possibly operable on the scan, they then did a staging laparoscopy to confirm it seemed operable and then went ahead. This was all decided at a multi-disciplinary meeting. The biopsy was done on the tissue removed in the actual operation. Anyway, hope you managed to get things moving asap!

[WilliamS]

This afternoon a Nurse Specialist phoned to say that surgery isn't an option and they are looking at chemotherapy. He has been given an appointment to discuss this with the Consultant on 27th April so it seems it will be quite a while before any treatment starts.

[Didge]

William, I am assuming the decision that it is not operable has come from a surgeon at the specialist hospital? Please make sure! Is your father going to continue with the local hospital? You can still ask to be treated at the specialist hospital even if it is not operable. Of course, it is your father's choice though. Hope to hear how he gets on in due course.

[WilliamS]

Hi Didge

Not sure how to email you but if you could send me the details of your bf's surgeon that would be great. Thank you.

"my bf also had locally advanced tumour but was operated on by a brilliant surgeon at one of the specialist centres (please email me for details if you want, we are not allowed to name hospitals)"

[Didge]

Hi William. I have asked the admin to give you my email address.

[WilliamS]

A fortnight is a long time when you're waiting for an appointment. Dad went to the Specialist Centre hospital this morning (about 2 hours' drive away) expecting just to have a chat with the Consultant about the biopsy result and chemotherapy. Apparently the tumour is deemed inoperable because of location near or around a vein. This was decided by the MDT.

The Consultant was concerned about his weight loss and inability to eat solid food and has admitted him, saying he should have another CT scan tomorrow. He's already had 2 CT scans (first on pancreas area and second on liver and lungs) which did not show anything. He was previously told the cancer hadn't spread to other organs.

He is on Creon and Lansoprazole but doesn't have much appetite and cannot chew meat. He says he cannot break it down. He can manage liquids, pureed vegetables, soft eggs, baked beans and tinned spaghetti. Hope they can find out what's causing this as the Consultant said at present he wouldn't be strong enough to start chemo. This is quite a drop in weight and condition - a month ago he was told his strength would stand him in good stead for treatment.

[rsk1974]

Two weeks feels like forever, at least if your dad's admitted then they can sort the problem out and try and build his strength up,so he can have chemo. You can then speak to the Dr's on duty and get answers. Good luck, hope you are doing ok.x

[Guest]

Hi,

Sorry I haven't replied to you before.

It angers me the wait in cancer patients for getting appointments. Especially pancreatic cancer. Waiting for appointments is just not good enough. It doesn't help the cancer, or your poor Dad's state of mind. For future appointments, do you feel able to try to chase them and try to see if you can get them brought forward?

Have they suggested steroids to your Dad to help with appetite? You could mention Dexamethasone and see if they would prescribe some.

If he is struggling to take the creon, he could open the capsule and sprinkle it onto some banana or apple sauce. He would need to eat it pretty much straight away, after opening the creon. I don't know what your consltants have told you about creon, but your Dad can take as many creon as his body needs. They can help with weight gain. They are enzymes, not medications, so there is no danger to Dad at all.

Leila xx

[WilliamS]

We did try to chase them but were promised that 27th April was the first available appointment.

He's not struggling to take his Creon or other medication at all. The problem seems to be before digestion. He says he physically can't chew meat any more. He has tried a saliva spray but this didn't seem to have any effect.

The Consultant said the reason for admission was "anorexia" and Dad is due to have a scan of stomach and bowels at 1pm today. Unfortunately I can't be with him as I can't get time off work at present and the specialist hospital is 2 hours away so visiting time would be over by the time I got there. I have spoken to Dad by phone this morning and he'd eaten cornflakes but is now nil by mouth until after the scan. Nothing has been mentioned about steroids as yet - thanks for the suggestion.

[WilliamS]

Dad has been discharged from hospital after a month. The scans and X-rays did not reveal any blockage. They have diagnosed gastroparesis - the stomach is not moving the contents to the duodenum and bowels. Apparently the recently onset diabetes can damage stomach nerves and muscles. No-one can suggest why he can't eat meat.

He is now at home and having daily visits from a district nurse as he's on a continuous infusion of metoclopramide, which means there's a sub-cutaneous tube in his upper arm and he's permanently attached to the 10" plastic box which holds the dispensing syringe.

He's still vomiting every few days. At least now he's not an inpatient the hospital have said they can refer him to oncology and he awaits an appointment.

[WilliamS]

Dad can't seem to keep any food down and is being sick every day now. Does anyone else have experience of gastroparesis?

[rsk1974]

I don't have any experience of gasroparesis, but just wanted to say I can empathise, my dad was being sick daily, but his was not caused by that. Horrible to see your loved ones being sick and not being able to help.

[Sueoliver]

Hi William my mum was very sick every day for approximately 6 weeks and they found her stent had moved! I don't know if your dad has a stent? I do not have experience of gasroparesis but don't let it go on! My mum became so weak she couldn't even stand on her own and was skin and bone! We have found the best help we got was from the hospice and A and E !

I hope you get it sorted.

Sue

[WilliamS]

Dad does have a biliary stent but the Consultant said there was no problem with it showing on the CT scans or X-rays. He has seen his G.P. three times in the last week and the dosage of metoclopramine has been increased twice but it doesn't seem to be making any difference.

[Sueoliver]

Hi William has he had an endoscopy? It wasn't until Mum had this they realised the stent had moved! Get them to look at everything.

Sue