A forum for advanced pancreatic cancer issues

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WilliamS
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Tumour size

Postby WilliamS » Tue Apr 07, 2015 8:20 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Tumour size

Postby Didge » Tue Apr 07, 2015 9:44 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Tumour size

Postby Didge » Tue Apr 07, 2015 9:46 pm

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

sandraW
Posts: 1039
Joined: Thu Oct 31, 2013 5:38 pm

Re: Tumour size

Postby sandraW » Tue Apr 07, 2015 11:40 pm

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
Posts: 286
Joined: Tue Aug 14, 2012 3:29 pm

Re: Tumour size

Postby PCUK Nurse Dianne » Wed Apr 08, 2015 5:04 pm

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
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Thu Apr 09, 2015 7:21 pm

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
Posts: 519
Joined: Thu May 22, 2014 8:22 pm

Re: Tumour size

Postby Sueoliver » Thu Apr 09, 2015 9:01 pm

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
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Mon Apr 13, 2015 8:18 am

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Tumour size

Postby Didge » Mon Apr 13, 2015 10:36 am

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
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Mon Apr 13, 2015 11:05 am

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Tumour size

Postby Didge » Mon Apr 13, 2015 2:24 pm

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
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Tue Apr 14, 2015 10:58 pm

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Tumour size

Postby Didge » Wed Apr 15, 2015 11:38 pm

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
Posts: 70
Joined: Sun Apr 05, 2015 9:00 am

Re: Tumour size

Postby WilliamS » Wed Apr 22, 2015 11:10 am

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
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: Tumour size

Postby Didge » Wed Apr 22, 2015 4:04 pm

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