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Confused about diagnosis


Guest Helenm74

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Hello. I found this site while trawling the internet for answers and I've read a few posts, my heart goes out to everyone.


My dad had a laparoscopy yesterday, not the first diagnostic procedure as he's also had endoscopy, colonoscopy, another endoscopy with biopsy taken, ct scan and pet scan.

The endoscopy with biopsy came back inconclusive so they did a pet scan and yesterday the laparoscopy where they took more biopsies. I should also say that the mass on his pancreas was first spotted 3 years ago when he was diagnosed with stage 2 bowel cancer (operation and chemo and seemed ok). Tests on the mass started end of summer last year when the consultation told him he wouldn't be here now if it was cancer. We did have hope.


Whilst in recovery yesterday the registrar (we think, as we were in the car park waiting) came with bad news. My dad relayed the information back to us that he was told there was no point in operating and there'll be no chemo. They couldn't give him any idea of life expectancy either. He asked what stage it was at and was told the type of cancer wasn't classed in stages. We have no information about the size, no TNM information.


My mum and I have so many questions and we're going to attempt to phone today to find some answers. Why would they take more biopsies if there's no operation or chemo? Does that mean it's spread? Why did it take a week to get the results of every other procedure but he was given this info at the bedside! The medical staff were treating him as if he was poorly, but he's not, no jaundice, no pain, no symptoms.


I know you'll probably not be able to answer, but this forum is the only 'line' I've got to a professional at 6am when I can't sleep...


Thank you for reading.


H.

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PCUK Nurse Lisa

Dear H,


My name is Lisa and I am one of the Support Line nurses here at Pancreatic Cancer UK. I am sorry to hear that you have been left reeling after your father's news yesterday. I hope you will find much needed support here on the forum from other people who have been affected by pancreatic cancer - I suspect you have digested some of their stories already.


We have a support phone line here at the Charity. I will post the details below, but I or one of my colleagues would be very happy to chat through things with you if you would find this helpful, either on the phone, or by email. We cannot access patients' own medical records, but have lots of experience in looking after people with pancreatic cancer and I hope can offer you support and information.


Thoughts are with you and your family.


Lisa

Pancreatic Cancer Specialist Nurse


Pancreatic Cancer UK Support Line: Freephone 0808 801 0707 (Mon, Tues, Thur, Fri from 09:00 - 16:00hrs and Wed from 10:00 - 18:00hrs)

or email: nurse@pancreaticcancer.org.uk

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Lisa, thank you, I think we/I will definitely be phoning the support line.


We managed to speak to the hospital today and although it was good to clear up our confusion, the end result is devastating.


We're awaiting biopsy results of metastasis to liver, stomach, bowel....


The only pathway seems to be palliative chemo which we will be able to discuss with the oncologist once referred. We've been directed to the macmillan website for chemo treatment information in the meantime.


Its been a tough couple of days, but knowing there is someone to talk to about it gives me some comfort.

Thank you to everyone behind the running of this forum


H.

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A bit of an update on my Dad. The biopsy results show nodules on the liver and stomach lining. Not the news we were hoping for. I'm immersing myself in technical terminology and countless websites to get a better understanding because that's what I do with things.


Its been a tough couple of days, it was my Father in Law's funeral yesterday. We lost him Boxing Day. He had alzheimers with vascular dementia so we lost him a long time ago really, although it doesn't make it any easier.


My Mum and Dad have said 'yes to all' in terms of help from various people and organisations. I've given them the support line number here too. We're talking, lots. It doesn't stop the tears but it helps to share everything.


In the last 3 years Dad had bowel cancer, surgery and chemo. That could have 'got' him but it didn't.

He had a swelling/lump/infection in his ear which could have killed him via meningitis, but he had a big operation to remove it and an implant afterwards.

He's been part of a pioneering trial for laser surgery on his eyes.

It's so unfair that he has conquered so much but still loses.

I'm going to lose my rock. My handyman. My information centre for all things practical. I've read so many personal accounts of losing family to cancer, but I guess you can never fully appreciated how devastating it is until it happens.


Love to all x

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  • 3 weeks later...
PCUK Nurse Rachel R

Hi Helenm,


It's Rachel here, one of the nurses. Thanks so much for posting an update. I am very sorry that the biopsy did not bring good news. Goodness, you have been through so much. Please accept my condolences for the loss of your Father-in-Law also.


You sound an amazing support to Dad. You sound super close to Dad and he sounds like such a special and treasured man.


We're here if you would ever like to chat. Thinking of you.


Rachel


Pancreatic Cancer UK Support Line: Freephone 0808 801 0707 (Mon, Tues, Thur, Fri from 09:00 - 16:00hrs and Wed from 10:00 - 18:00hrs)

or email: nurse@pancreaticcancer.org.uk

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