Pancreatic cancer fear.

[Shepster47]

Im new here, 47 and know i suffer from health anxiety. However, every time i have a fear it does turn out to be something.

Example, headaches, pressure in my head....feared a brain tumour....and it turned out to be a pineal cyst.
Lower abdominal pain with ribbon stools....feared colon cancer, turned out being diverticulitis.
Throat upper gastric pains, feared stomach cancer, turned out to be a large hiatus hernia.
I also have fatty liver and have back pains that im sure are due to anxiety.
So i know i do tend to assume the worst.
There is one cancer that ive always been frightened of getting as it is almost certainly terminal with only 1% cure and thats pancreatic cancer.
So we come to my latest worry.
Around 4 months ago i felt a stomach pain below my left rib. I also noticed my back pain was worse than usual and in the middle of my back (its normally my lower back or neck)
The stomach pain felt different. Ive had pains in my lower left with diverticulitis and also much higher in my chest area with my gastritis and hiatus hernia. This was mid stomach.
I also noticed that the pains hurt more when i ate and also when i layed down.
So i visited my gp who gave me the usual ppi medication that did nothing.
This lasted a month and i noticed my stools were lighter than i'd even seen.
I googled my symptoms which all pointed to my dreaded pancreatic cancer.
My gp arranged an abdominal ultrasound which was ok except they couldnt see my pancreas due to stomach gas.
One night my pains we so bad and my wife noticed i looked slightly yellow. So we went to a&e and i was admitted as my billirubin was high.
I was given a ct scan which came back normal and my gilberts syndrome was blamed for my jaundice. By this time i had lost nearly a stone.
Since my ct scan came back normal my gp will not send me for any other scan even though we dont know what is causing my pain.
So im now paying to see a private consultant. She arranged for me to have a stool elastase which also came back normal.
So its now 4 months since i first noticed my pains. My back hurts more, my stomach pain seems to have moved a little more central but hurts more. I am having trouble sleeping as the pain is keeping me awake. I have tried lots of stomach and ppi medication and nothing works.
I know this is bad and i dont think its my anxiety causing this.
My private consultant has now ordered an mrcp as it supposed to be good at seeing the pancreas.
I just have this feeling the ct scan has missed a tumour. Its been 3 months from the ct scan and im in so much more pain than i was.
My gp still thinks its anxiety but pancreatic cancer is hard to see on a ct scan so can easily be missed and im worried its spread by now.
Shep

[BikerMatt]

Have you had your gallbladder checked? Your symptoms sound what i've gone through for a year. If you had pancreatic cancer you would be very very ill by now.

[Carys]

I really feel for you, as each time you've had symptoms they have turned out to be 'something' albeit not the worst scenario you imagined, and treatable, but a definable medical condition. It must be really hard for you to know what is HA and what isn't and also to doubt, more than most, when you are told its 'just anxiety'. I think your proactive approach towards getting a consultant to do a private scan is right in your circumstances - when is that happening? However, you will also recognise that your 'worst case scenarios' never were that, and although ill health was present, it wasn't of the sort you envisaged. I don't know anything about pancreatic cancer (and won't be looking it up)so can't add to that part of the discussion, but would imagine that your symptoms could be from other conditions too and not the 'worst scenario' you imagine. I didn't want to just read and walk by, and not sure I've been much help either

[Shepster47]

Thanks guys

My mrcp is this monday 22nd. then i have to wait 5 days for the report to be done and sent to my consultant. By my reckoning my consultant should get it by the following monday and she does appointments on tuesday night. But when i rang the imaging centre they said it could be tuesday when my consultant gets the results so dont make an appointment for that day. So i'll probably have to wait for two weeks after the scan.....two weeks is not good for someone with anxiety.

Thats the thing. Although i do have anxiety, there is always a real pain. And in all my other ailments, ive never been in continuous pain like this. This is the worst ive ever felt and this is getting worse every week. My anxiety generally gives me palpitations or a bit of nausea. This is a massive stomach pain that wakes me up in the night and i can feel get worse when i lay down so i know its a physical thing.

What is annoying is when my gp says its anxiety, i then say ok whats causing my back pain and stomach pain and giving me mustard stools and she comes out with nerve pain in my stomach, ibs for lighter stools and anxiety in my back.....all at once. I thnk shes clutching at straws because ive never had any of these pains before and ive had health anxiety for 10 years and suddenly getting 3 totally new pains.

I thought about gallbladder but i would have thought pain would have been more to my right side than left. Also wouldnt they have seen something on my ultrasound or ct scan.

I know pancreatic cancer is rare. I just hope to god im not one of the 122 a year in my age group who get it. The worry is that stomach and back pains caused by pancreatic cancer is when its advanced so i dont stand a chance.


Shep

[Carys]

Hmmm yeah, two weeks wait......not good at all when a) you are in pain and b) you have such a level of fear and anxiety. I think its very easy sometimes for GPs to put everything down to anxiety, once you have that diagnosis, and as you are well aware yourself even anxious people get physical problems. Once again, I think you are right to get this scan done......is there any way that you could ask them to get it to the consultant quicker/ or ask if they could fast track it IF there is a problem. I know what the answer will be, more than likely, that they have a timetable and you have to fit to it. Might be worth expressing how anxious you feel about it to the consultant (email to his/her secretary) and asking if they can ensure that they do receive it quickly so you can be seen in the week (rather than two weeks). I know you shouldn't have to be pushy like this, nor should you have to even be doing this all privately! but this doesn't seem fair to make you wait this long.
In the meantime all you can do really is employ the skills and tools you will have learnt in your HA, and remind yourself that probability states you are far far more likely to have a much less sinister problem than the one you fear. I wish I could be of more help, as I don't envy your current circumstances and can entirely see why it is giving you major anxiety. You seem quite level headed and have evaluated what symptoms are anxiety and what aren't, but remember it doesn't mean that it is the most unlikely of scenarios either. It is encouraging also that the ct scan which came back to your GP was clear, hold that thought.

[Shepster47]

Hi
Yes you are right. Its going to be a bad 2 weeks. I am going to ring my consultants secretary and ask her about getting the diagnosis early.

However, i think it will be bad news and so i think the consultant is professional and will want to speak to me about the bad news in person rather than over the phone.
So if i get a call saying the consultant has made an appointment to speak to me rather than telling me all is fine by phone, i will know its cancer. Horrible!

My main worry is that it gets more painful when i lay down. To me thats a physical thing, i think my weight is pushing on the pancreas. Thats also why i think it hurts when i eat as my stomach is full and pushes on the pancreas.

Its a horrible situation. Im trying so hard to keep my anxiety at bay by keeping myself busy but at the same time im wondering if i should prepare myself in case its bad news. If that is even possible.

The problem is a pancreatic cancer diagnosis is basically a death sentence. Only 1% survive over 10 years. Only 3% survive over 5 years.

Im am absolutely terrified of death.

Thanks

[paranoid-viking]

My gp still thinks its anxiety but pancreatic cancer is hard to see on a ct scan so can easily be missed and im worried its spread by now.
Shep

Hey! From WHERE did you get that PC is hard to see on a CT scan? CT scans are very accurate and VERY reliable when it comes to detect cancer. Sure, there ARE nightmare stories of cancer escape a CT scanning. But these are MINORITY cases. I think that you have read to many nightmare stories about CTs missing cancer; the tabloid media and awarenss groups loves to throw those horror stories to our faces.
Yes, pancreatic cancer is frightening to fear, I fear it too. But trust me, you had a CT scanning. And - if the CT did not see your pancreas they would TELL YOU. Just like they told you ultrasound could not see the pancreas. And if they could see the pancreas they would see if there was a tumour on it.
And - if what you describe as symptoms were in fact PC a CT would most certainly see it because it would mean that the tumour was big or even mestasised.
And one thing - please dont write stuff that it is hard for a CT to see the pancreas because that is controbuting to trigger other posters fear of cancer too. I realise you had read those nightmare stories, but they are not representative. CT is at least 95% reliable. Also for PC. Spreading myths is not good for people writing here.
About the yellowness - was it in your eyes. Was it "yellow all over" or just slight yellowness? Were your eyes yellow? You know, if you have some yellowness on your skin but not in your eyes it is probably not jaundice but a result of vitamin defiency. Have you checked your B12?

[Shepster47]

Hi

Sorry you are correct, i should have been more careful what i write on here. It was more my opinion than fact. I went jaundiced but the reason was attributed to my gilberts syndrome. Yes my eyes went yellow but it was an unusual spike. My bilirubin was sky high. I normally just go slightly yellow in my skin when im ill but this was the first time it had happened in my eyes aswell hence why they admitted me into hospital. The yellowing went away in 2 days while in hospital.
They did a normal ct scan rather than a pancreatic protocol ct scan as it was to check my overall abdomen. I do not know the actual percentage, i had read between 70% and 90% but things may have changed.
I still have all the symptoms after 4 months so i stated i was worried it had missed something. it was probably my anxiety talking but i am just stating my opinion about my health.
I have had my mrcp now so i just have to wait for the results. A scary 2 weeks but i have to stay positive. If its clear then its back to the docs to find out what is causing all these worrying symptoms.

[Carys]

I already thought you were quite clear about the cause of the jaundice....and that the CT scan was your opinion (and part of what was causing you to be fearful). I saw nothing wrong in your post. I was wondering how you'd got on today and if you'd managed to get them to hurry along the results. Obviously not, sadly.

[paranoid-viking]

I understand you fear absolutely and I am praying for you. But that the CT was clear is a good sign and a sign of hope.
Arelative of mine had something on the pancreas shown on an ultrasound, but a CT showed it was a beningn cyst, thank God.