Why are we waiting

[KarenR]

Hi all

This is my first post here. My husband was diagnosed with pancreatic cancer very quickly on 13 August after two visits to A&E and a couple of days in hospital. He has had several scans, camera down throat, ultrasound and a stent fitted in bile duct (this has made huge difference to the jaundice) Biopsies have been taken on gallbladder (there is a blockage) oesophagus and pancreas.

We were expecting a call on Thursday to advise what operation/treatment he would have after the doctors meeting earlier that day. However the nurse rang to say his case has been sent to another hospital that specialises in cancer and that team are looking at his results tomorrow 2 September. This seems fair enough as my husband was told that it’s likely he’ll go to that hospital for likely Whipple procedure.

My concern is the cancer could be spreading, we know it’s aggressive, whilst we wait. Another concern is that he’s been referred to this hospital because it’s worse than first thought. We’ve had no official diagnosis or any idea of what stage, just a 4cm tumour in pancreas.

I am desperately trying not to ‘lose it’ but I am scared beyond belief.

Sorry for the rant, I am positive most of the time but struggling with the wait and really struggling to keep my husbands state of mind positive too.

My other concern is that despite trying to prevent more weight loss, he has lost 5lbs just this last week. We have always followed a very healthy diet, always active etc. He is having three small meals plus 3 snacks a day which are high fat but healthy, ie avocados, nuts, smoothies, dried fruit etc but with no appetite, it’s hard. My darling husband of almost 41 years is withering away in front of my eyes.

Any advice please? Anyone else feel like I do? Am I being irrational/selfish?

Thank you

Karen

[PCUK Nurse Rachel R]

Hi KarenR,

My name is Rachel, I'm one of the nurses on the support services at the charity. I hope you don't mind me responding to your post. I wanted to say hi and welcome you here, I'm sure others will post soon. I am terribly sorry to hear of your Husband's diagnosis, I can only imagine the heartache you're going through. You are certainly not being irrational or selfish, quite the opposite. This is definitely the place to rant - please don't apologise for doing so.

In terms of being referred to another Hospital this is likely to be what we call a specialist centre or specialist multi-disciplinary team. This should be the case for anyone diagnosed with a pancreatic cancer. This specialist team have greater expertise in managing and treating people with this type of cancer and should have oversight of a person's care and treatment. The person referred may not be necessarily seen face to face by this team but their case should be discussed at their multi-disciplinary team meeting and the outcome fed back to you by the team your Husband is being cared for locally, I hope this makes sense.

In relation to your concerns about your Husband's nutrition and diet, these are very valid and important concerns. I wonder whether your Husband is taking pancreatic enzymes? These are important for the majority of people with pancreatic cancer as they help a person to absorb what they are eating. Often a tumour in the pancreas can prevent these enzymes from being made and / or can cause difficulties in them travelling into the first part of the small bowel where our food is absorbed.

We would be more than happy to chat to you on the phone or via email if that is easier, we can talk further about the things you mention or anything else. Our contact details are in the signature below.

Sending kind thoughts,

Rachel

Rachel Richardson

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707

[Sammi12]

This was posted some time ago so I am not sure if you are still active on the forum.

However I had a similar (in some respects) experience. Although I am only 34 and just had my first baby now 4 weeks old. I was admitted to hospital with gallstones whilst pregnant and had a number of scans, an ERCP to have a stent in my bile duct - like your husband this really helped my jaundice

I was induced so that I could have more tests and my care was sent to a specialist hospital after being told I had PC. There was no formal handover with the hospital, no formal diagnoses and once I was seen by the specialists hospital they told me I shouldn't have been given a diagnosis without a biospey.

I had the endoscopy and biospey which was then inconclusive - so I still dont have a formal diagnoses but PC is still dangling over my head!! It is horrible. I have the same symptoms as your husband - the only thing on my side at the moment is my age!

And although I have lost some weight it is hard to tell if this is in relation to this or me losing baby weight - either way I am now pre baby weight which is quick given it is only 4 weeks.

Would be good to hear how you got on if still using the site.

My thoughts are with you both. X