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George
Posts: 9
Joined: Sun Nov 06, 2016 8:54 am

Help for my sister please

Postby George » Mon Nov 07, 2016 11:22 am

Hello, I am posting for my sister. She has given me permission.

Here are some of the background.

In April she was getting really bad pain that radiated to her mid back, mainly when she was sleeping. One night she had had enough and decided to go to the ER. Once there they did blood-work. That came back as showing slightly high liver enzymes. They also did a CT scan and it showed double duct dilation on her common 7mm and pancreatic ducts 4mm. No stones that she could see. So they told her to follow it up with my GP to get an ultrasound.

She had that ultrasound but there was too much air for them to see.

Dr told her not to worry about it, because the ducts are nonspecific for whatever that mean. But we ask to see a gastro dr anyways.

She saw him in Aug, did blood and again liver was showing slightly high. He suggested that she get an endoscope to look at her stomach, he told us right away that she has an inflamed duedeno and several ulcers, he prescribed her meds and told she to come back in six weeks to see how she is doing. oh and he also ordered a MRCP but that appointment is not until March 2017...

The next day she call him up saying that she couldn't take the nausea anymore and he order a hida scan to just make sure she didn't have stones. That was done on Oct 21.

She received at call last Monday to go over the results, this is what the pathologist wrote, 'gallbladder looks fine. Delayed biliary to bowel transit which can be see in the context of partial common bile duct obstruction. Given the ductal dilation noted on recent CT, further imaging with MRCP plus enhanced imaging of the pancreas is suggested.' So he told his secretary to call the hospital to get her a MRCP sooner. But that could still takes months.

As you can imagine, we are somewhat frightened.

Other complaints are pain, mainly in her left side but that could be from the ulcers, also, the meds for that don't seem to be helping her. She has always had constipation issues but now they are becoming alot looser and she said that they are starting to float, but the color looks good. She gets pain after she eats. And is nauseous a lot. She said the pain isn't that bad, but sometimes at time while lying down or sleeping she'll wake up because of the pain that radiates to her back.

We asked the Dr if the dilated ducts could cause nausea and he flat-out said no. But me being the skeptical doesn't really believe that.

If you made it this far thanks. Do you think we have cause for concern here? Anyone here experience the same kind of things as my dear sister has?

Any help you could give us would really be appreciated. OH and she's almost 50 yrs o

Wife&Mum
Posts: 397
Joined: Thu Dec 03, 2015 3:12 pm

Re: Help for my sister please

Postby Wife&Mum » Mon Nov 07, 2016 12:38 pm

Dear George

Welcome to the forum but I'm sorry you find yourself here.
Hopefully your sister doesn't have PC but I understand her concerns. The PCUK nurses are very experienced at advising people who have such worries so my suggestion would be for you or her to contact them in the first instance. Their helpline is:

Freephone 0808 801 0707
support@pancreaticcancer.org.uk

My husband had one of the red flag symptoms - jaundice - and was diagnosed very quickly. But your sister's symptoms do tick several of the boxes and if I were her I would go back to the GP immediately saying that I was very worried it was PC and that her diagnosis therefore needs to be expedited.

Good luck!
W&M xx

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Help for my sister please

Postby Dandygal76 » Mon Nov 07, 2016 12:39 pm

sorry your sister is suffering. I will post later as not been on here for week and need big catch up. Is your sister also losing weight and are you in UK? I cannot post V well from my phone but I am sure others will chip in. Please call nurses at PCUK... they will answer you better than all of us. They really will help you. X

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Help for my sister please

Postby Dandygal76 » Mon Nov 07, 2016 12:42 pm

W & M my dad never had jaundice as in tail of pancreas... pain radiated from left side just under the rib cage. X

Didge
Posts: 826
Joined: Sun Dec 29, 2013 10:35 am

Re: Help for my sister please

Postby Didge » Mon Nov 07, 2016 12:45 pm

Trying and failing to post so having another go! Sadly many people are diagnosed through A and E because if delays through the GP route so it may be worth another trip. If so pick a good one.

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Help for my sister please

Postby Dandygal76 » Mon Nov 07, 2016 12:46 pm

Sorry... I can see you are UK now as have gp. Was confused with the ER rather than A&E. X

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Help for my sister please

Postby Dandygal76 » Mon Nov 07, 2016 12:50 pm

I agree with didge... trust your instincts as well. I would rather annoy a few people than ever waiting on this diagnosis. If you have funds you can get ct scan for under 1k. I would certainly do that if option for you and you can eliminate this possibility within 2 weeks. Inhealth is good national company used by NHS. They do private scans. X

Dandygal76
Posts: 762
Joined: Sat Mar 12, 2016 9:49 am

Re: Help for my sister please

Postby Dandygal76 » Mon Nov 07, 2016 1:02 pm

Sorry for multiple posts... it is about £500 for the scan...

https://www.inhealthgroup.com/services/ct-scan

Justamo
Posts: 473
Joined: Sun Sep 04, 2016 10:38 pm

Re: Help for my sister please

Postby Justamo » Mon Nov 07, 2016 3:24 pm

Hello George, sorry to hear about your sister. Does the pain ease if she sits and leans forward ?
Best wishes, Mo

PCUK Nurse Chris
Posts: 17
Joined: Wed Jan 14, 2015 4:03 pm

Re: Help for my sister please

Postby PCUK Nurse Chris » Mon Nov 07, 2016 4:27 pm

Hello George,

I am sorry to learn of your sister's symptoms and appreciate what a worrying time this must be for her and all her family. I am emailing you directly so that you have an email containing information that will hopefully prove useful to you and your sister.

Kind regards
Chris

Pancreatic cancer nurse specialist
Support team
Pancreatic Cancer UK

George
Posts: 9
Joined: Sun Nov 06, 2016 8:54 am

Re: Help for my sister please

Postby George » Thu Nov 10, 2016 8:44 am

Wife&Mum wrote:
> Dear George
>
> Welcome to the forum but I'm sorry you find yourself here.
> Hopefully your sister doesn't have PC but I understand her concerns. The
> PCUK nurses are very experienced at advising people who have such worries
> so my suggestion would be for you or her to contact them in the first
> instance. Their helpline is:
>
> Freephone 0808 801 0707
> support@pancreaticcancer.org.uk
>
> My husband had one of the red flag symptoms - jaundice - and was diagnosed
> very quickly. But your sister's symptoms do tick several of the boxes and
> if I were her I would go back to the GP immediately saying that I was very
> worried it was PC and that her diagnosis therefore needs to be expedited.
>
> Good luck!
> W&M xx
Hello, sorry to hear about your husband.
She called the DR yesterday to see and the only thing they can do is put her on a cancellation list. She then inquired about getting a endoscopy, but she just did that about a mth back, there is no reason that I can think of why she would do that. But that was the receptionist that she was talking to, my sister requested a EUS but she said that he doesn't do that, but I don't thinks she has a clue. She said she would get back to me on what he says, to that should be today.

George
Posts: 9
Joined: Sun Nov 06, 2016 8:54 am

Re: Help for my sister please

Postby George » Thu Nov 10, 2016 8:47 am

Dandygal76 wrote:
> sorry your sister is suffering. I will post later as not been on here for
> week and need big catch up. Is your sister also losing weight and are you
> in UK? I cannot post V well from my phone but I am sure others will chip
> in. Please call nurses at PCUK... they will answer you better than all of
> us. They really will help you. X

Hello Dandygal,

We live in Canada, I like this forum because it seems to be more active then all the other ones that I have see.

She is not losing any weight that I can see of.

George
Posts: 9
Joined: Sun Nov 06, 2016 8:54 am

Re: Help for my sister please

Postby George » Thu Nov 10, 2016 8:49 am

Dandygal76 wrote:
> W & M my dad never had jaundice as in tail of pancreas... pain radiated
> from left side just under the rib cage. X

That is the same thing with my sister. Were his bile ducts dilated.

George
Posts: 9
Joined: Sun Nov 06, 2016 8:54 am

Re: Help for my sister please

Postby George » Thu Nov 10, 2016 8:53 am

Dandygal76 wrote:
> I agree with didge... trust your instincts as well. I would rather annoy a
> few people than ever waiting on this diagnosis. If you have funds you can
> get ct scan for under 1k. I would certainly do that if option for you and
> you can eliminate this possibility within 2 weeks. Inhealth is good
> national company used by NHS. They do private scans. X

I think I will suggest it to her to go to the ER if she doesn't get the tests happening sooner. Even his receptionist mentioned that she would get faster test in an ER setting. But if that's the case then why didn't they do that when the ddd was first reported?

George
Posts: 9
Joined: Sun Nov 06, 2016 8:54 am

Re: Help for my sister please

Postby George » Thu Nov 10, 2016 8:55 am

Justamo wrote:
> Hello George, sorry to hear about your sister. Does the pain ease if she
> sits and leans forward ?
> Best wishes, Mo

She said that pain is mainly at night, it wakes her out of sleep, once she gets up she feels better, so i guess the answer would be yes.