How long did original diagnosis take after CT scan?

[chris3964]

Hi Guys

Before I start I just wanted to say how I admire much you and your families courage and determination in fighting this terrible condition. I myself have not been diagnosed yet but im currently being investigated. My symptoms in a nutshell are large greasy stools, intolerance to fatty foods and pain/discomfort in the abdomen particularly under my left rib (all symptoms have been present for 22 months) in

In this time ive had 2 mris/mrcp of my abdomen and 3 sets of full blood tests( liver function,kidney function, full blood count, pancreatic amalyse/lipase, bone profile) and an endoscopy all of which are normal. After my second MRI was clear in July 2013 I stopped going back to the GP as beforehand I was convinced that I had PC and visited him at least monthly for 10 months. After the second scan was clear he rather sternly told me that I should stop being concered about PC and that I had IBS but he would refer me to a gastroenterologist for review.

That review was today and the gastroenterologist believes im suffering from possible pancreatic insufficiency despite not having diarrhea or weight loss.The cause could be chronic pancreatitis but I dont drink or possibky PC. He has arranged a CT scan and im awaiting an appointment for the scan. I suppose I just want to ask you experienced guys How quick do you get results after the scan? And have you come accross other sufferers who have had symptoms for nearly two years without getting worse?

[Nelsmum]

Hi, to answer your main question, I was called in by the gastro two days after I had the CT, I wasn't due to see her for another couple of weeks. As to whether you could have had it for two years without getting worse I don't know. I had symptoms for around a year that gradually got worse before I was diagnosed. I also had diarreah and lost a lot of weight. They weren't looking for PC in my case but you say that you have told then your concerns so you would hope they are correct when they say you doyn't have it. Wishing the best for you with your scan results.

Jane C

[J_T]

Hi and welcome. Must have been a worrying 22 months for you! My husband got his scan results the same day but he did have jaundice.

Good luck.

Julia

[sandraW]

My husband had his CT scan on the Thursday morning at 8-30 am the hospital telephoned the next day to say he had an appointment for the following Wednesday with a different specialist, we were under an endoscopy specialist at that time, but she didn't know why, when I checked on the internet I found out that it was a surgeon we were seeing, he had his operation 11 days after the appointment.

When he had his operation they found he had a cyst a tumour and panreatitis, and yet he was still quite well, although he had intermittent pain and had lost his appetite to a degree,he didn't have jaundice as his tumour was in the tail of his pancreas.

I hope in your case it does just turn out to be panceatitis,and nothing more serious. take care sandrax

[RoyBoy]

Hi,

I had my C.T. scan on April Fools Day 01/04 and got appt with consultant 07/04 and was told I had P.C.(operable). I only had slight pain and discomfort in my stomach area for around 7 months beforehand. I had my operation 26/04 and recently started my chemo. Good luck to you.

[Bowie]

Hi, James didn't have any pain or any major symptoms, intermittent diarrhoea, but only occasional. However, he did have weight loss. One and a half stones in total and he is normally quite slim. If he hadn't paid for a CT, I'm convinced he would still be waiting. His GP kept saying stress and he is so laid back he is only horizontal. When he got the CTit reported the same day, but took lots of calls to his GP to follow up. I think this is more a reflection of a very poor service from a disinterested GP. I think weight loss seems to be quite one of the major symptoms, so hopefully as you haven't lost weight you'll be OK.

Kind regards Fiona X

[chris3964]

Thank you all for your replies and I hope is as well as can be with you and your families, I have my CT scan in 2 weeks time, on one hand the feeling of constant pressure under my left rib makes me believe its pc rather than pancreatitis while on the other the fact that ive had 2 clear mris/mrcp and I run over 120km a week without weightloss gives me hope that its not pc.

[J_T]

You sound very fit indeed! Good luck with the scan.

Julia

[jay]

Good luck with your scan. My husband was admitted to hospital in October 2013 with jaundice, had ct scan which was "fuzzy", so they did a mri scan 3 days later, and within an hour they said they suspected cancer.He was then transferred to a regional specialist hospital where they did an endoscopy and took a biopsy. The following day after the biopsy the consultant said initial results are "suspicious" and a week later finally got the results. Didnt know at the time his 19.9 marker was over 2500!

Its great you are fit and haven't lost any weight.

Jayne

x

[chris3964]

Hi guys

I'm still awaiting a diagnosis with no communication. I had my CT scan on the 23rd of July and have not heard anything from the gastro specialist until a random MRI appointment with small bowel preparation instructions arrived in the post yesterday.

Now I don't know what to think!. As I hadn't heard from the specialist or had results I visited my GP 4 weeks after the scan and he assured me if anything sinister was going on I would have heard in less than a week and he also would have been updated by the gastrointestinal specialist so he told me to treat it as no news is good news.

The unexpected MRI has now hit me like a bombshell and my natural worry is that they saw something on the CT which was suspicious and needed further investigating.

On the other hand would I really have been mishandled by waiting 4 months ( by the time of MRI scheduled for NOV 13) to have a follow up on a suspicious scan with no communication in between?

Anyone had similar experiences?

[rsk1974]

That's awful treatment leaving you in limbo. All I would say is when my dad had scans he got the results very quickly and that was because there where sinister things showing up. I would contact the consultant and get some answers to at least get a reason for the mri and the results of the ct scan. Good luck.

[chris3964]

Hi Guys

Im still struggling to get a diagnosis with my symptoms. My MRI was unremarkable with no enlargements/ lesions etc.It turns out my pancreatic protocol CT Scan picked up a small bowel wall thickening but the MRI was clear. At the time of the MRI results were given to me the gastro doc said that he was booking me for a non urgent endoscopy (NHS) to test for celiacs ( already had bloods for this which were negative) and he was happy nothing sinister is going on.

However what has become a problem since then is that I have started itching all over with no apparent signs of any rash just maybe some skin redness/dryness but not all over as with the itching. I visiTed my GP who ran LFTS and other blood tests and all were within normal ranges with the exception of the alkaline phosphatase which was very slightly lower than the norm.

I expressed my concern about the itching being linked to my digestive/abdominal problens and PC but he assures me that the July CT scan would have detected PC given that my symptoms have been ongoing for over 2 years. He said that my people who itch with PC would have elavated LFTS which I dont have, so he is treating the itching as a seperate issue.

Has anyone else had experience of itching without Jaundice or elevated LFTS? Or scans which missed tumours? Sorry to ask but I feel like im running down an endless alley with my digestive symptoms and now the itching, without any diagnosis

[chris3964]

Hi guys

Im still undiagnosed in my pursuit of getting a diagnosis its coming up to 3 years in August. I have recently started suffering with bad heartburn which my gp prescribed omeprazole for despite my endoscopy coming back normal. This past weekend I have started to suffer with really bad stomach pain and im unable to eat/drink much without feeling nauseated and bloated.

On top of my other symptoms :-

Greasy floating stools

left rib pain

itchiness

general chronic abdominal discomfort

Im still convinced I have undiagnosed PC. However ive had most testing that is available:-

Colonscopy

endoscopy

2 Mris/mrcp

CT scan with pancreatic protocol

6 monthly bloods (lft,kidney,fbc,amalyse,bone profile)

Which have all come back clear with the exception of the CT which showed a thickend small bowel. When this was investigated with an mri enterograph it could not explain the CTs finding

I went to the gp today regarding the bloatedness and nausea, ive been told its probably functional dyspepsia but ive been given another blood test sheet to run the same bloods.

I feel so lost, I just want an answer to my decline in digestive health but all the testing ive had has come back clear

[Didge]

One blood test that you should ask for is to check your CA-19-9 tumour marker levels. Most PC sufferers have raised levels though not all. That is easy to do. Then I would ask for another CT scan with contrast on your pancreas as it is some time since you had a pancreas scan isn't it? Have your symptoms got worse? But if these tests are clear then hopefully you are not suffering from PC and even though it must be miserable not knowing what is wrong with you, that would still be good news!

[chris3964]

Thanks for the reply didge

My gp has told me he cant request blood tests for tumour markers? I have to wait for the gastroenterologist to do so. I have asked for another CT which he has refused as he feels ive been investigated enough and doesnt want to expose me to more radiation for what he feels is an unnecessary scan as he feels I just have gastritis and ibs.

I then asked for a self funded MRI ( which would be my third) as im concerened of the occurence of chronic heartburn( can feel burning sensation in my throart and at times my chest). My endoscopy was normal so I cant have gastritis or reflux, I wonder if PC was causing heartburn would that have been picked up ? (not the pc, the acid erosion, does it work the same?)

In terms of my symptoms other than the presence of heartburn and a slight increase of my abdominal discomfort, I have remained unchanged. I had another full panel of bllods this week and all were normal

[MSH]

Chris,

I know very well that once you get something into your mind it can be difficult to shake off, and I don't wish to offend, but I don't think you are doing yourself any favours by coming to these forums. Some things are difficult to diagnose, others rule themselves out by exclusion. If you had had untreated pancreatic cancer for three years you wouldn't be posting now, (and probably not even if treated).

If you want to pay for a private investigation, then as Didge says CA19-9 is probably the best at this stage. Myself, I would save my money, or better still have a holiday to celebrate.

[Edit] Also be aware that chronic pancreatitis can cause a modestly increased CA19-9.

Mark

Edited June 2, 2015 by MSH

[PCUK Nurse Dianne]

Hi Chris,

Thanks for your most recent post, and also to those forum members that have provided some supportive suggestions for Chris. As I am sure many of you are aware some of the symptoms for pancreatic cancer can be similar across many of diagnostic areas. I am sure this has been very concerning for you Chris and it is great that you have felt welcomed to be able to use the forum for support from others.

We also appreciate that for many patients it is difficult to be managed with 'non conclusive answers' to investigations and can leave you feeling that you are in 'limbo land'.

There are some other conditions that can cause similar symptoms with bloating, and the pale floaty stools along with weight loss. It may help to look at some of the research about 'Bile Acid malabsorption/deficiency' as these have similar symptoms ie loss of weight, loose stools etc, and can be common in some patients after they have had their gall bladder removed. One of the treatments for this is called Cholestramine or Questran (helps with bile acid absorption) and may help, along with the use of pancreatic enzymes in some patients.

These conditions may not necessarily be apparent on CT scans/MRI scans, but there would be other more appropriate examinations that would be useful ie a Barium meal and follow through along with screening to test for Vitamin absorption especially Vitamin D and B12.

As has been mentioned, now that you have had your symptoms for some lengthy period Chris, this must have been difficult for you, however is not necessarily a cancer diagnosis, but may require some differential diagnosis to be considered and the most appropriate testing for this. Please do feel free to be in touch Chris if we can help (support@pancreaticcancer.org.uk) and more than happy to have further discussion.

I hope this has been helpful and reassuring.

Kind regards,

Dianne

Pancreatic Cancer Specialist Nurse

Pancreatic Cancer UK

[Didge]

Hello Chris

Of course, as the nurses have said, we on this site are used to these symptoms being connected with PC and of course there are other things it could be. But not knowing and not feeling well must be difficult. If you do manage to fund a CA-19-9 blood test and the tumour marker levels are normal perhaps that will reassure you. However, as Mark says, I see it is now 3 years since you first got symptoms and although some types of PC are slower, most are aggressive, so it is good news if you are not getting any worse. I do hope you find some answers soon. Good luck! Didge.

[Fraz]

Hello there,

I must've been about an hour,pretty fast .

No messing straight to stage 4,doom n gloom.

No jaundice for me,still a little shocked.