A forum for family, friends and carers of pancreatic cancer patients

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Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Tue Feb 04, 2014 11:01 am

Hi Cathy,
Thank you for your post.
I am in the UK with my mum, she lives here.She is eating small frequent meals, is not really constipated as she takes a laxative most evenings.She has been both an NHS patient & private! The care was better on the NHS, but I feel they've just palmed my mum off!
Her symptoms to date are extremely distended abdomen and swollen feet, back and stomach niggles.
An EUS is scheduled for this Friday as two attempts of an ERCP failed to get a conclusive result.

PCUK Nurse Jeni
Posts: 1099
Joined: Mon Jun 14, 2010 1:30 pm

Re: False negative result ERCP

Postby PCUK Nurse Jeni » Tue Feb 04, 2014 12:17 pm

Hi Ruth,

I am sure Dianne has replied to you by now, but the forum family are correct in their caution. Having a "benign" result is probably not the correct terminology. As Mark said, it is more the case that they did not obtain tissue which contained tumour, in which case, it would be inconclusive and not "benign". As Mike also said, the biopsies can be taken from the liver - much easier to access. All in all, given the physical symptoms you are mentioning, and clinically looking at your mum, you would have to be wise and assume their diagnosis, (minus biospy), is correct.

I know that you have emailed us as well, so we can always keep in touch with regard to future treatment.

Kind regards,

Jeni, Support Team.

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Re: False negative result ERCP

Postby Ruthos1 » Wed Feb 05, 2014 12:10 am

Thank you Jenni so much for your reply.
I feel so upset that my mum is having to go through this vile test for the third time.I wish they would just try from the liver which I feel would be less invasive and distressful.
I have had a reply from Diane thank you .
Thank you for your help.

marie souter
Posts: 198
Joined: Thu May 30, 2013 7:58 pm

Re: False negative result ERCP

Postby marie souter » Thu Feb 06, 2014 11:08 am

Hi there,

I have seen instances of people needing repeated biopsys due to swelling in the pancreatic area ... I think most people have a somewhat distended abdomen just down to side effects from the disease itself (internal swelling) .. what you have to look for is a significant increase .. for blockages you would need to check for .. are they moving their bowels, passing wind below of above? if so then an obstruction is very unlikely ..a full obstruction there is no mistaking it really, the tummy would be very distended (my mother looked 9 mths pregnant, this happened overnight, she went from her usual swollen abdomen to looking very pregnant) tapping the tummy it would sound like a drum ... there would be a massive increase in pain ..... there is of course the ascites which is the build up of fluid mentioned earlier .. I believe this can actually be drained off in some cases (I'm not medical) but I believe ascites is more common in people with liver disease?
My notes here are not to scare but mainly to give you extra information to set your mind at ease with regards to obstructions my moms obstruction happened the last week of her life and as they thought she was having partial obstructions throughout they gave me the info I needed as to what to look out for and I always felt much better informed to deal with everything ahead of me ..

fingers crossed for your mom

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Re: False negative result ERCP

Postby Ruthos1 » Sat Feb 08, 2014 12:30 pm

Foo morning,
I posted on here last week staring that my mother had had a negative biopsy result from her pancreas, despite being told that she had advance pancreatic cancer with weeks/ months to live.
An EUS was performed yesterday with a view to taking a other biopsy.The surgeon was unable to reach the pancreas due to a narrowing at the duodenum.He managed to take several biopsies from there and we are now awaiting the results, plus another CT scan has been requested.He is now mentioning chronic pancreatitis .
Her symptoms to date are mild niggly pains in her abdomen and back plus very swollen legas and feet by the evening.
She did have jaundice but that has subsided!
Has anybody else experienced anything like this.
We are totally confused now.

Posts: 21
Joined: Sun Feb 02, 2014 10:28 pm

Chronic pancreatitis or Pancreatic Cancer

Postby Ruthos1 » Sat Feb 08, 2014 3:52 pm

I wonder if anybody else has experienced similar....
Here goes, my mother was diagnosed with supposedly advance pancreatic cancer on Xmas eve, with a small lesion on the liver and 'inflamed' lymph nodes at the head of the pancreas and a golf ball size mass on the head of the pancreas.
We have had a negative biopsy result back which was taken early in January.An EUS was performed yesterday with a view to obtaining another biopsy from the pancreas.This was unsuccessful as there was considerable narrowing at the duodenum.Several biopsies were taken from there.
We are now awaiting the results and a repeat CT scan has been requested .
We are now being told there's a possibility it could be chronic pancreatitis !
Her only symptoms are niggly pains in her abdomen and back plus recently very swollen feet and legs ( of an evening).
She did have jaundice but that has subsided ( strange)
I look forward to hearing your news and views.

Posts: 49
Joined: Sun Jan 12, 2014 1:21 am

Re: False negative result ERCP

Postby Janiebobs » Sat Feb 22, 2014 10:45 pm

Sorry to hear about your Mum, my dad also didn't get a positive result from his Biopsy in Jan from the ERCP. The oncologist said they could do it again but they would have to go through his back to try reach the tumour. It would have to to performed in the specialist centre which is over 100 miles from their home. As my dad is elderly (83), lost over 3 stone and is frail the oncologist advised against the procedure.
I hope your mum is feeling stronger

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Joined: Sun Feb 02, 2014 10:28 pm

Re: False negative result ERCP

Postby Ruthos1 » Mon Mar 10, 2014 12:17 am

Hi Jane,
Just logged on now and saw your post.
How is your dad?
A lot has happened since I last posted.
Biopsy results( taken from the duodenum as there was too much obstruction to reach the pancreas) were negative.
I have since seeked a 2 nd opinion from a specialist in Southampton .
He is of the opinion that my mums CT scan is characteristic of chronic pancreatitis but is not ruling out cancer of the pancreas as yet.
An MRI and PET scan have been requested.
My mum is not well , she can only manage small amounts of food, appears jaundiced again( bloods being taken tomorrow ), pain most days .......
Apparently pancreatitis can cause these symptoms aswell.
What makes the Drs think your dad has cancer?
Is it the CT scan result?
I wish you and your dad all the best.