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Shepster47
Posts: 7
Joined: Sun Oct 08, 2017 11:26 pm

possible pancreatic cancer?

Postby Shepster47 » Thu Oct 12, 2017 6:25 pm

Hi
I'm new here and i hope I'm posting in the correct place.
Mods please move if i'm wrong.

Sorry for the long post

I'm 47, male, and having serious pains in my left abdomen and back and am really worried it could be pancreatic cancer. i seem to an increasing amount of symptoms every week.

For the last 5 years I've always seemed to have something wrong with me. I Always felt under the weather but blood tests never showed anything serious. I was diagnosed 4 years ago with Gilbert's syndrome. I had a routine liver function blood test and they believed it to be that. my LFT's have been tested every year since then. This has meant my pee has always been a yellow colour. I was then diagnosed with fatty liver disease when my alt levels were high and found on an ultrasound.

about 3 years ago, i then had left side abdomen pains and after alot of tests and a colonoscopy was found to have diverticulitis. i think i also have IBS as i regularly have bouts of diarrhea.

15 months ago i had really bad gerd and after an endoscopy was found to also have gastritis and a hiatus hernia. I was prescribed antibiotics and pranteprozole 20mg for when i felt the gerd was bad. not to use all the time. I also had a full abdominal ultrasound which found my liver, spleen, pancreas and kidneys to be normal (except for the fatty liver)

During all this time i have bouts of joint pain, back pain and neck pain. ive always put this down to anxiety. i have felt tired most of the time but cannot sleep and i generally suffer from fatigue. i takes me 3 attempts to mow my lawn as i get out of breath.

My liver test at the beginning of the year was my best yet. All levels were now just within range. My alt was exactly 40. (it had been 100 at one point)

Cut to 2 months ago. i got bone pains in my mid back near my kidney area and pain right between my shoulder blades that just seemed to come on overnight. A few weeks later and i got a left abdominal pain right below the rib cage. As the rib pain was definitely a new pain for me (my pains were always low). of course I then went to my docs who ordered some blood tests and did a urine sample. The sample was clear so the gp wasnt worried about my kidneys.
The bloods came back LFT ok, kidney functions ok, calcium ok. full blood count all normal. However he never ordered amylase, ca19-9 or c reactive protein. i begged for a scan as i was still in agony and the gp agreed to send for an ultrasound.

1 month ago.
I had now had the pains for a month and my back pain between my shoulder blades was even more painful and was even worse when i sat back on a chair or laid down. i also developed a pain in my left pelvis that is still here now.

I found i got a really bad pain in my side when i laid on my left and was struggling to get any sleep. To make matters worse, between the gp and hospital they had lost my referral......so that was 3 weeks wasted and i had to start again and wait for for another ultrasound.
These last few weeks have been hell. im not sleeping as i cant find a comfy place to lay, the pains in my back and under my ribcage is agony. I am taking codeine for the pain and its not touching it. i am like a walking zombie. im still going to work and thankfully i have a desk job and can lean forward to work.

i started to worry this could be pancreatic cancer when i read the symptoms on the nhs website and realised i had many of the symptoms.

This last week ive had non stop diarrhea, and to make matters worse it is a lighter brown and has undigested food in it. It does not float and is not oily but is quite smelly. This has freaked me out, ive had diarrhea many times but nothing like this with undigested food and im now thinking i may have pancreatic cancer. I just cant seem to get into the nhs system. I have been waiting well over a month and still not been given any ultrasound date.

last night i was in so much pain that i nearly went to A&E to see if they would give me a scan.

To recap after my waffling:-

i have back pain directly behind my left kidney/pancreas
i have back pain between my shoulder blades higher on my back. This pain gets worse when i sit or lay on it and gets better when i sit forward.
i have a continuous pain just below my left ribcage that hurts more when i lay on my left side
i am very weak and tired (i have been for a long while now)
i have lost weight but unsure if its through anxiety
i have light brown diarrhea with undigested food in the stools.
general bloods ok but gp not done any specific pancreatic ones.

i had a full abdominal ultrasound 15 months ago. Do you think pancreatic cancer could have been missed? or that it has grown and spread in those 15 months? im not sure how fast these things grow.

what do you guys think? do i have the classic symptoms or could this be something else.

I'm am so scared, i stupidly read the statistics in the nhs website and now all i can think about is dying and leaving behind my girls and my beautiful wife. Life was going so well.
If i do have pancreatic cancer, i am scared that with all my pains it may have spread and there will be nothing that can be done.
Im 47 and i guess its quite rare for my age but it does happen.

i cant sleep, the pain is driving me crazy and im getting worse every week.
To make matters worse i cant seem to get into the nhs system to get a scan.

would a&e give me a scan if i went and explained im in agony?

i dont know if to just pay and go privately and have an mri or something
is that the best scan to have?
im not sure if the ultrasound i will eventually have when the nhs gets round to it will be good enough.

Your thoughts will be greatly appreciated.

Shep

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: possible pancreatic cancer?

Postby BlacJAC » Fri Oct 13, 2017 10:55 am

No one can really tell you if they think it's pancreatic cancer. Only tests and ultimately biopsies can tell you one way or the other.

What i will say and it's a trap I too fell into at the beginning is it's very, very easy to fall into the trap of putting all your symptoms into a single basket and coming up with a condition that fits them all rather than looking at the more obvious scenario, that all these symptoms may relate to 2 or more different conditions or ailments. It's entirely plausible that your back pain is a disc or nerve issue and that your GI issues are from another. This is how it was in my case and when you consider the amount of people who go through this, it's the most likely case.

Codeine, well, that in itself can cause pain down there. Your bowels stop functioning properly. It's notorious for creating gastro problems. Especially colon issues. Lets also get something out in the open, your symptoms from years ago are highly unlikely to be from pancreatic cancer as you'd not be here typing this 5 years after the event.

The flip side of the coin, US are more often than not next to useless when it comes to looking at the pancreas. There have been people who have had some inclination that there's something wrong via an US, but many more you have been told all is rosy when a CT/MRI have told a different story.

Undigested food. I used to get that a lot before I altered my diet and when my anxiety was through the roof. I haven't had that for an absolute age now. That could be purely down to IBS or anxiety. It was in my case.

My issues are still ongoing and I'm still seeking answers, but what i don't do now is lump all my symptoms together because some are separate from the GI issues even though it would be easy to lump them together.

I suggest requesting an MRI for your back/liver and take it from there. If you go in demanding all the tests under the sun you're more likely NOT to be taken seriously. Of course, you can bypass all that and do it privately which I did with certain tests/scans when i felt I was getting nowhere.

Where i was at the beginning: Swollen Lymph nodes, back pain, weight loss, floating stools, pale stools and upper right pain.

All the above pointed to PC, but the URQ pain was because i have a tight bend in my colon, my back pain was disc related, weight loss I'm assuming was down to anxiety as I've put on 1/2 stone since and remained constant. Nodes were from previous enlargement due to virus or infection. Stools, I still have no idea 2 years later.

Shepster47
Posts: 7
Joined: Sun Oct 08, 2017 11:26 pm

Re: possible pancreatic cancer?

Postby Shepster47 » Sun Oct 15, 2017 1:05 am

Thanks blacJac

My symptons took a turn for the worst yesterday as i became jaundice. So unfortunately i think mine is pancreatic related.

I also dont have any former back problems, I have a desk and we all have special chairs that are good for our posture and back. I wasnt doing any type of lifting i just noticed these 2 points on my back started hurting one day. One directly behind the kidney/pancreas and one high up between my shoulder blades.

Then soon after the pain in my right ribs also manifested itself. I am worried about the pain directly behind as it may mean spread.

Due to the pains and jaundice ive been admitted to hospital (friday the 13th, just my luck. My bilirubin is sky high so they want to see whats causing it. They didnt get around to giving me a ct scan today so im now having an anxious extra day while i wait. I better get the scan tomorrow or i think my heart will explode. I cant take another day in hospital.

I cant believe with all these symptoms they didnt rush me through. I explained how anxious i was and they were adamant it would be today.

I have not had a b/m for 2 days since i had 3 yellowy diarrhea b/m's with undigested food in one day. I am normally as regular as clockwork one a day for as Iong as i can remember.

I am so scared about tomorrow but the wait is even worse. I am still angry that i had an ultrasound instead of a ct scan 16 months ago. I will never know if my pancreas was really clear or missed by the radiologist. That one scan may have cost me my life.

I wish i had gone privately as i have works health insurance but they wanted consultant referral so it would have taken just as long as the nhs.

I cant sleep tonight. Ive had a panic attack already. Tomorrows scan could signal my death sentence.

Thanks

Shep

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: possible pancreatic cancer?

Postby BlacJAC » Sun Oct 15, 2017 4:06 pm

Hi Shep,

So sorry to hear about your latest symptoms. What you do have going in your favour and taken from the nhs website:

Symptoms of Gilbert's syndrome

Most people with Gilbert's syndrome experience occasional and short-lived episodes of jaundice (yellowing of the skin and whites of the eyes) due to the build-up of bilirubin in the blood.

As Gilbert's syndrome usually only causes a slight increase in bilirubin levels, the yellowing of jaundice is often mild. The eyes are usually affected most.

I know you said your readings are sky high, but 'Sky high' could still fall within a slight increase depending on actual numbers. Is your jaundice really bad or mild? If mild, then it may just be part of the above syndrome.

Shepster47
Posts: 7
Joined: Sun Oct 08, 2017 11:26 pm

Re: possible pancreatic cancer?

Postby Shepster47 » Sat Nov 11, 2017 9:20 am

Hi
Sorry i didnt update things but ive had alot of pain and kept off the net.

So my ct scan with iv contrast came back clear. The yellowing was attibuted to gilberts syndrome. The hospital discharged me with an outpatients appointment for an endoscopy.

I had the endoscopy this week that showed the hiatus hernia again and prepyloric erosions. From reading thats nothing to be worried about.

im still in agony with the left side rib pain. I still get central stomach pain 10 minutes after eating a meal and feel bloated. My stools are still yellow and soft and have bits of food undigested in them. I still have the back ache and the bone pains. Nothing has changed and all have got more painful. The ppi tablets have done nothing so im going to stop taking them.

Im a little worried the ct scan has missed something as ive heard pancreatic cancer is very hard to see. But all my organs were fine on both the ct scan and ultrasound so hopefully even if its missed a tumour it is very small and still in the pancreas.

If feel im back to square one. I wish i had insisted they do more scans while i was in the hospital but they just kept saying the ct scan showed nothing and it was probably in my stomach or colon.

I dont know where to turn next. I have so many symptoms and my bones are getting worse as is my anxiety. My wife thinks im just refusing to believe the docs but im in absolute agony. Its going to be ages before i can get back into the nhs system and all that time could prove costly if i do have pancreatic cancer. I have a very small window of time to catch it while its operable and possibly still in the pancreas.

I am thinking of going back up to hospital and speaking with someone about my scan. Is it possible to do that? I know they are busy but im in agony and each day could mean the difference between operable or spread.

Am i being paranoid about the ct scan missing pancan? I just dont know what else could be causing the continuous left rib pain. I spoke to a lady on the macmillan forum and her husband had the same pain in exactly the same place, he had pancreatic cancer.

Also, does anyone know if a radiologist would look at bones as part of the routine when checking the ct scan. Would mets to bones show up on a ct scan. I wish i had the ct scan myself so i could take it somewhere else for a 2nd opinion.

The one thing that im clinging to is that the ct scan and ultrasound was normal, showing no spread to any organs or anything in my abdomen. Now if my bones are mets due to pancreatic cancer, surely there would be something on the ct scan, surely pancreatic cancer would show up if it was advanced enough to have gone to my spine and pelvis.
Surely the pancreas would look different, mishapen or bigger or something. Surely if its grown into the nerves to cause pain in between my shoulder blades it would show on the ct scan. I would be very unlucky if its gone to 4 separate bones and been there long enough to have caused enough damage to these bones to be in agony with them and not show up anything in my liver or anywhere else in my abdominals, or even my lung (i also had a lung xray a few weeks before). Anyone have an advice or what the left side pain could be. Im pretty sure its not colon as its so high up.
Shep

Shepster47
Posts: 7
Joined: Sun Oct 08, 2017 11:26 pm

Re: possible pancreatic cancer?

Postby Shepster47 » Sat Nov 11, 2017 11:33 am

Meant to say. I have a doctors appointment for the 20th Nov, then urgent referral would be 3rd December. I may just go and take my chances at a&e and see if they can do anything. I dont think they do an mri at a&e do they. I have private healthcare but i have to have a referral from my gp so its not really any quicker. Its been 2 months since i first got the pain in my left rib. Its been constant since then I hate the waiting and not knowing what is happening
Shep

BlacJAC
Posts: 48
Joined: Thu Oct 29, 2015 8:14 pm

Re: possible pancreatic cancer?

Postby BlacJAC » Mon Nov 13, 2017 11:22 am

As far as things go, that's good news that the jaundice wasn't attributed to anything sinister. You simply wouldn't get an MRI/CT/US/X ray going into A&E as an out patient. Scans at A&E are solely reserved for accidents and emergencies. Unless you presented as either, you wouldn't be entertained. Even if they were to entertain you, you'd get the lesser of those (X ray or US if you were lucky).

It actually just goes to show you the state of the NHS in some parts of the country that people feel they have little or no alternative but to bypass the GP by going straight to A&E. On a bit of a tangent here, even the cancer statistics are very poor in that respect. Many people people get diagnosed via A&E because something somewhere in the NHS has let them down. I get some of those have been because people themselves have ignored symptoms, so i'm not laying all the blame at the feet of the GP's or the NHS.

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: possible pancreatic cancer?

Postby Ant11 » Mon Nov 13, 2017 11:48 am

I think it's pretty safe to say if you had pancreatic cancer with spread it would show up on the CT Scan. My Sister-in-law's was found with an ultra sound, that she demanded at her doctor's, she did'nt have jaundice due to her tumour being in the tail of the pancreas. The ultra sound was then followed by a private CT scan which confirmed the full extent of her disease, with too many tumours to count on her liver. Her bllod tests for CA-19 also confirmed PC.

Shepster47
Posts: 7
Joined: Sun Oct 08, 2017 11:26 pm

Re: possible pancreatic cancer?

Postby Shepster47 » Mon Nov 13, 2017 3:07 pm

Hi
Thanks for replying.
Yes i hope the ct scan hasnt missed anything. Maybe im not being fair to the radiologist.
Its just ive had this pain between my shoulder blades for quite a while now and isnt getting any better with rest. Plus theres the pain in my stomach on the left side.
I do have a large hiatus hernia but nhs website mentions indigestion and heartburn more than back pains.
I also get central stomach pains and a bit of indigestion about an hour after ive eaten.
These are all red flags.
To be fair all my scans, my lipase, my crp, liver bloods (except bilirubin due to my gilberts) have been fine so i'm going to struggle to get any more scans done. So i think i will pay for them myself and have peace of mind.
So the question is.....which scan(s) do i need to be totally sure whether its pancreatic cancer or not.
Thanks
Shep

Ant11
Posts: 125
Joined: Sun Dec 01, 2013 8:43 pm

Re: possible pancreatic cancer?

Postby Ant11 » Mon Nov 13, 2017 4:26 pm

From our experience, all that was needed was the ultrasound, confirmed fully by CT scan and blood tests. Tracy never had a MRI scan, only a PET scan but that was when chemo stopped working and they wanted to check the level of disease. We used to get copies of the CT scans and reports as these were sent to a couple of Harley Street doctors where Tracy had appointments for 2nd opinions. They confirmed exactly the same.

I'm not really sure where you can go from here, but if you had PC they would have diagnosed it from the tests you have already had which are clear. All the lovely people we met on this forum had different experiences but the end results confirming their worst nightmare.

I would'nt wish this vile disease on my worst enemy.

Marmalade
Posts: 40
Joined: Thu Jul 06, 2017 3:29 pm

Re: possible pancreatic cancer?

Postby Marmalade » Mon Nov 13, 2017 4:30 pm

Hi Shepster47,

Great news that the scan is clear!

It is highly unlikely that a CT contrast scan will have missed a PC tumour especially given the length of time you have been having issues. Do you feel it more likely that your symptoms are IBS and Gilbert's syndrome exacerbated by anxiety? They are both painful conditions.

You do not say anything about your diet and exercise, have your made any changes in the light of your diagnosis? I also think you may benefit from taking some action to manage your anxiety issues, whatever the physical issues, and you clearly have some distressing ones, they will be made worse by excessive anxiety. Maybe this is something you could look into. It may make you feel more in control and will give you a focus to take your mind off looking for more serious conditions.

I hope you are feeling better soon.

Marmalade

Marmalade
Posts: 40
Joined: Thu Jul 06, 2017 3:29 pm

Re: possible pancreatic cancer?

Postby Marmalade » Mon Nov 13, 2017 4:37 pm

I really think you are not helping yourself by continuing to have scans and other procedures which there is no evidence that you need. The private clinic will also need a referral from your GP. I am sue you have pain but I'm afraid with the collection of conditions you have you will have pain and the medics will have to try and manage that better for you and you will have to manage your diet and lifestyle to help them.

As I said previously there is clearly an issue with anxiety and this will be adding to your problems.

CT scans are reviewed by a whole team not just the radiologist in order to determine a diagnosis and treatment plan so it is very unlikely that anything has been missed.

Best wishes

Marmalade

Shepster47
Posts: 7
Joined: Sun Oct 08, 2017 11:26 pm

Re: possible pancreatic cancer?

Postby Shepster47 » Wed Nov 15, 2017 3:16 pm

Hi
Thanks for replying
I do agree with what is being said above.
I know i have severe health anxiety, and im on medication for it.
I know the anxiety is possibly clouding my judgement with this.
The specialist looked at the scan on his own, the radiologist told me he was on call and reviewing all scans from home as it was a sunday. The report came back clear about 2 hours after my scan and the hospital allowed me to go home.
I do have a large hiatus hernia and diverticulitis so i do believe most of my symptoms can be attributed to my conditions.
Im just not sure about my back ache between my shoulder blades. Can a hiatus hernia cause pain there?
I know exactly what you mean, am i chasing answers that i already know. Am i wasting time and money just to satisfy my anxiety.
Shep

Justamo
Posts: 400
Joined: Sun Sep 04, 2016 9:38 pm

Re: possible pancreatic cancer?

Postby Justamo » Wed Nov 15, 2017 4:14 pm

Hello Shep. You ask : "Am i wasting time and money just to satisfy my anxiety".

Trouble is, you're not satisfying your anxiety. You're feeding it.

I do understand (I think) how worried you are feeling, but it seems that you really have exhausted the PC route now. Like Marmalade, I think you would be better off trying to deal with your health anxiety. What does your GP have to say ? You may be better off 'starting again' and not coming towards your problem from the PC direction, if you see what I mean.

It is easy to make your symptoms fit the disease if you try. I really think you should ask for help in dealing with the anxiety. I know you are on medication for it, but it doesn't seem to be working, does it ? Perhaps you could see a practitioner who would take a more holistic approach ?

I do hope that you will feel better soon.
With best wishes
Mo

Shepster47
Posts: 7
Joined: Sun Oct 08, 2017 11:26 pm

Re: possible pancreatic cancer?

Postby Shepster47 » Fri Nov 17, 2017 1:31 am

Hi
Thank you for all your responses. You guys have eased my fears of having pancreatic cancer. You are all right in what you state. A clear ct scan is good enough prognosis to scrub pancreatic cancer from my diagnosis. Thank you for giving me hope.
i know anxiety is playing a large part here. I do agree anxiety is contributing to my stomach ailments. I actually rang a local conselling service who said once i got answers to these latest ailments, then i can sort my health anxiety with cbt.
im not imagining all these symptoms. My right hip is the latest bone to start hurting over the last day or so. I had a good think about what is the catalyst for my health anxiety and its definitely the bone pains. I have had these bone pains for a long time now, the mid back pain and the pain between my shoulder blades almost a year on and off. First the mid back ache, then higher back between my shoulder blades, then the left shoulder blade, then my left hip and finally my right hip. This right hip is especially bad. These pains feel deep in my bones, and none are getting any better with rest. They definitely hurt more at night and If i lay flat on my back on the floor i am in agony. I used to keep fit 4 times a week lifting weights and know what muscle pain feels like and it isnt this, this is bone pain.
This is where my health anxiety is running wild, having these bone pains causes a unrelenting fear that they are mets from some yet to be found primary cancer as they are not getting any better no matter what i do. If i get answers to my bone pains it will take away the main cause of my anxiety.
So i think when i see my gp, after telling him about my symptoms i need him to arrange me to visit a bone specialist to see whats wrong. If he wont then i'll pay to see a consultant.
One the main reasons i am worried about my pancreas is due to the bone pain between my shoulder blades. Many stories ive read have had this as a symptom. Take that bone pain out of it and my symptoms would sound more like my hiatus hernia, ibs or my anxiety were the cause for all my stomach pains, i wouldnt even think of pancreatic cancer. Hence why my bone pain is the catalyst for all this worry. This is why blackjac's theory of it being two conditions causing these symptons is probably correct.
This new right hip pain is by far the worst of all my bone pains and Its keeping me awake tonight. Its now 4am. Something is definitely happening to my bones that needs addressing. Im logically thinking here, if it was bone mets, the newest onset of pain (my right hip) wouldnt be the most painful out of the 5 hurting bones. i would expect the worst pain would have been the pain felt earliest and would have progressed into something far worse (maybe even fracture) after so long but they have kept at a dull burning pain.
Sorry for rambling, im so tired of this and just want some restbite from it all.
Shep