Help for my sister please

[George]

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

[WifeampMum]

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]

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]

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

[Didge]

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]

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

[Dandygal76]

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]

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

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

[Justamo]

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

Best wishes, Mo

[PCUK Nurse Chris]

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]

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]

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]

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]

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]

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.

[George]

PCUK Nurse Chris wrote:

> 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

Thank you, I replied

[George]

Just thought I would give a quick update. Sisters Dr. was unable to get a MRCP sooner then March 27th, he's not too keen on waiting that long so booked an appointment for Dec 15th for a ERCP, but unfortunately there were 2 emergencies that came in that day so it got cancelled. Then he said he didn't want to do it right before Christmas, he didn't explain why, were assuming he didn't want to do it then because of the risks of getting a pancreatic attack which could mean being in the hospital on Christmas. They have re-booked her for Jan 12th.

My sister is still getting pain, but it's not constant. She said that it feels like the food is sitting in her stomach longer after she eats and she sometimes feels uncomfortably full, last night she awoke to feeling nauseous and ended up throwing up. But that could be from the ulcers I assume?

I hope everyone had a good Christmas (if you celebrate it).....

[Dandygal76]

Hey George.. hopefully this will all be sorted on 12th and you will find out it is not PC. I have my fingers crossed for you and wish you all the best for the new year. x

[Guest]

Hello George,

Sorry that your sister is having such an awful time and we all know how worrying it is to have symptoms but no proper diagnosis. Having said that you need to be aware that most of the people on here have no medical training or experience except from there own family members nor do they have any of your sisters medical history. The symptoms you describe could be any number of things. It is quite a leap to go from discomfort after eating, nausea and pain which can all be caused by ulcers and blockages to the duodenum, to PC. I would definitely want to know what is causing the ulcers and get them dealt with to help with her symptoms. Has she been tested for H. pylori infection or been given any other treatment for them?

Has your sister lost any weight or been diagnosed with sudden onset type II diabetes? I have to say I don't recall anyone mentioning gastric ulcers as a PC symptom but I am certainly no doctor.

I understand the frustration of waiting and you will see from my threads that I am fully supportive of faster diagnosis but the uncomfortable truth is that the more tests that are carried out to reassure people who don't fit the urgent test criteria, the less spaces there are for those who do. I don't know if your sister has PC (I am praying that she doesn't) I understand the temptation to scour the internet and how dangerous that can be so I urge you to speak to the nurses on here and or to ask your GP for a second opinion, which is your right if you feel they are not moving in the right direction or fast enough. It's important to have confidence in your doctor so if you are not happy change your GP or ask for another opinion.

I hope your sister is a little more comfortable this evening and that the New Year will bring her some answers.

Best wishes,

Marmalade xx

[George]

She was in much pain over the weekend. Performed an emergency scan, they saw something at the head of her pancreas, they are not saying it is cancer but they also are saying it's a possibility it is.

Marmalade, i am quite aware you are not Dr's or have medical training, i wasn't looking for an answer to her problems, just someone to talk to with people that have unfortunately have had to endure this from a close friend, loved one or themselves.

I feel like I have annoyed you and perhaps others, I won't post any more, I am sorry if i offended anyone.

I hope nothing but the best for everyone who have to face this ugly beast.

Take care.

George

[sandraW]

George,

I am sure that Marmalade did not mean to upset you in any way, please be sure of that fact.

The forum is here for everyone, so please do continue to post, I am sure you are very worried about your sister and we all want to know how she is doing, so please keep posting and let us all know.

I don't post so much now, but when my husband, Trevor, was going through his journey with PC this place was a lifeline for me. take care and I hope to hear your sister is doing better, and that she isn't facing this dreadful disease, sandrax xx

[Dandygal76]

George, I know most people on here pretty well on and off the forum. Let me reassure you that you have not upset anyone, least of all Marmalade. Being given that news on the scan will have made you feel very stressed and I can remember feeling exactly the same with my dad thinking I was annoying people on here but then I stayed on a bit longer and realised it is not the case. We can all read the written words in tones not intended and I certainly did not read anything in Marmalade's tone other than her wanting to be even handed to make sure you get the absolute best advice you can get for your sister from all sources available (including us). Marmarlade wants to make sure you get unbiased views as well to ensure you can make informed choices.

Stay strong you and let us know how you get on. I have everything crossed your sister does not have PC.

xx

[Guest]

Dear George,

I hope you are looking at the forum and will see this. You have most certainly not annoyed me and I am very sorry if I made you feel that way, truly I am. I am sorry that you are upset and hope that you will not stop posting.

This forum is for everyone, we all have opinions that not everyone shares and sometimes something catches a raw nerve but we are united in the desire to help, support and learn from each other whatever our views.

I lost my husband to this disease last August and would not wish it on my worst enemy, I also know the pain of waiting for diagnosis so am doing all in my power to make sure that those who follow don't have to queue for scanner space and diagnostic procedures like we did, and like you are still doing, and that is people who do manage to get urgent referrals never mind all those who's symptoms fall outside the guidelines like your sister.

As I said before, I hope and pray that your sister does not have PC and will not need this forum but, if she is unlucky, then you and she will need the kind of support found here and you will continue to be welcomed with open arms, mine included, so please don't leave.

M xx

[Justamo]

George, please don't stop posting. We all understand how you feel and I can't see how you could possibly have annoyed anybody on the forum. We all feel that our nerves are at breaking point sometimes, and then it is so easy to start imagining things.

We call this awful illness The Rollercoaster. One minute everything is fine, the next minute you're in the middle of a nightmare and then the next day things are fine again. You go from heaven to hell and back in 24 hours.

Please stay on the forum. We need each other on here. We learn something from everyone who shares. Every member has different strengths- even people like me - and we all know that you are feeling very raw and hurt right now.

Look forward to hearing from you tomorrow.

Love Mo

[Veema]

Hey George...do come back...it sounds like you need some support whether it's cancer or not. There are some instances where tumours on the pancreas can be benign...so lets hope that what they've seen is that. If it does turn out to be cancerous, you can count on us to be there for you both. The main thing is, is now they've seen this 'thing' on her pancreas, she will have more intensive tests to determine exactly what it is...which is the main thing right now.

Lots of prayers and positive vibes that it isn't cancer...do keep us posted.

Vx