advice

[dave144]

hi everyone,i was wondering if i could have some advice.

i had a pain in my left side near the bottom of the ribs slighty to the back area for 12 months,doctor thought it was a torn muscle so i left it for 6 months,i

went back as the pain had gotten worse,they then said it could be a stomache ulcer,so i was put on omeprozole 2 a day.i took that for 6 months and did nothing so went back to the gp.

they then sent me for ultrasound and all looked good except couldnt see pancrease due to stomach gas,so they then sent me for endoscopy,i was given all clear on that so

again i went back to the doctor,each time fighting for them to listen to me!!! the pain 10 weeks ago has moved to mid left side back nearer left shoulder blade(about 2 inches below)and is much more painfull.

not a sharp pain but a dull constant ache that feels warm or burning feeleing.its worse when i sit or lay down but feels much better when i sit and lean forward,or lay on my right side in bed.

its worse minuts after eating or even drinking water.and better on empty stomache.my stools have been floating the last 4 weeks and pale in color also droplets of oil sometimes can be

seen on the surface like a rainbow.ive had a dozen blood-urine-stool tests ect all came back ok.i keep going back to the doctors and have had 6 visits since january!

i told them i think it could be pancrease and they said i should have pain in the stomache,i only have pain around the back a inch or so away from my spine.they say becasue my lipase

test was normal it cant be anything to do with my pancrease.i went again the other day as feel tired alot normally sleeping 3 hours during the day and they finally agreed to do another

ultrsound ,that was 2 days ago and again they couldnt see any of the pancrease due to gas in the stomach.im not supprisse as the last 2 months ive had terrible gas like half dozen a hour!.

in between all this i had a chest x ray which showed heart and lungs normal.they have made a appointement for me to go to the gastroenterology clinic at hospital but these appointments take upto 8 weeks!

then il probbally have to start all over again?? trying to get them to listen.ive had more than 10 gp visits and 6 differnet doctors in a year!from what ive heard when you start feeling pain you may

not have long to live if its pancreatic cancer,i want to know as time could be running out and want to make things at home right especially with my 9 year old son and wife.i seem to be getting worse

as the weeks go on,it now hurts in the same area when i breathe in. i could do with a ct scan but i dont think my gp can refer me for this,so when i finally get my hospital appointment

and if they actually belive me and give me a ct scan there is upto 8-11 weeks waiting time.my wife says im over reacting and we will cross that bridge if it comes,but seeing as though i might not have long we may neather reach the bridge!

need some advice please

thx

dave

[Dollysdaughter]

Hi Dave,

I'm not in a position to give you any specific advice but just wanted to say that, although you are right to be cautious and keep on persisting with your GP, your problems could be due to a number of things. I think you are right in that your symptoms do sound familiar with a lot of people on here but try to keep calm if you can. I know that Dianne or Jenni, the fantastic nurses on here will get in touch with you and I am sure give you more specific advice. You must feel very frustrated and worried but I'm sure you will know the cause of your problems soon and I hope it is put right as soon as possible.

Best Wishes, Sara

[J_T]

Hi Dave, again I'm no medic but your symptoms do sound very familiar to me and I would certainly keep banging your drum at the GP and I would out and out and say that you want a CT scan.

My husband's pancreas couldn't be seen on ultra sound because of gas too and likewise an endoscopy showed only gastritis. It was only when he got jaundice and was immediately sent for a CT that we got the diagnosis of PC.

If I was your personal friend I would be urging you to get a CT scan. I don't know how easy it is but to be perfectly frank I would saying to the GP if it turns out to be pc (and I sincerely hope it doesn't) you'll be making complaints! Tbh I don't why they have let your symptoms go on for so long without sending you to a specialist.

Good luck

Julia

Edited March 4, 2014 by J_T

[cestrian]

Hi Dave

Diagnosis of PC can be very difficult as most of the symptoms could easily be mistaken for those presented by much more common conditions. I don't think I need to have any medical qualifications to say you've been messed about for long enough - demand a CT scan now!!

Love and Peace

Mike

[Didge]

Go to A and E (apparently half PC patients are diagnosed there anyway). Pile it on, terrible pain, list all the suspect symptoms too like the reflux. Have you had your blood sugar tested? Say you're worried it could be pancreatic cancer. Say your uncle/grandfather/cousin died of it (lie!). I can't urge this too strongly. So many people are messed around for weeks and often months. If you have any choice of hospital choose the best one!

Good luck and let us know how you get on (and apologies to anyone who thinks my tactics are wrong but I don't) and hope it turns out to be something else!

[J_T]

I don't think so Didge but that's just me. Knowing what I know now, I'd move hell and high water to get a CT scan.

[Didge]

By the way, Julia's suggestion of saying to the GP that you will make a complaint if it turns out to be PC is a good one but I would put it in writing. I did the same when fobbed off for 3 years about a knee complaint which I thought was incorrectly diagnosed. I researched a hospital, made sure they would accept me if referred, and then wrote to GP saying that I believed I had been misdiagnosed, saying what I thought it was, and which hospital I wanted to go to, and that the delay in diagnosing and treatment was unacceptable. Most surprised to get a courier 3 days later giving me appointment at my chosen hospital for the following week, they confirmed MY diagnosis and was operated on shortly afterwards. I could then walk again! I am still on good terms with GP, we don't mention it, apart from his occasional enquiries 'how's the knee?' to which I reply 'great!' But a letter's contents cannot be denied, so worth considering if you don't want to go down the A and E route.

[Cathy]

Hi Dave

Sorry to hear of your difficulties.

I would suggest ringing (or emailing) the nurses on this site and ask their advice. My own would be to get a CT scan fast tracked ASAP to hopefully rule anything ominous out.

Their contact details are on the home page

Cathy xxx

[dave144]

Well went to see the doctor again today.she said the ultra sound was good???? Even though yet again they couldnt see

The pancrease.basically she doesnt think its anything to do with my pancrease and said i was too young at 40.

She cant send me to a ct scan because i dont tick any of the 10 boxes.she said its most likley gallstone.and gave me

Another piece of paper to go any have some more blood tests.ones ive allready had and they were all clear last time.

There is no proof i have anything wrong with my kidney liver gallbladder .yet rather than say it could be pancrease as

Its the only thing the ultra sound hasnt seen suggest gallstones.even though if i lay on my right side the pain

Completley goes.what symtons of pancreactic cancer suggests to the doctor to investigate it?

My lipase test was fine and im too young. ive lost 11lb in 3 weeks all my stools float and pale i have back pain few inches below left shoulder blade much worse when i sit or lay flat but feels better leaning forward or laying on my right side.

Hurt minuts after eating or drinking and sleeping 2to3 hours during the day

Must be something wrong with me?

Sorry for a rant just really fed up today.

Dave

[Annie14]

Sorry to hear you have haven't been well. Your symptoms sounds incredibly similar to my husbands. He was also told it was likely gallstones. He is only 36 but he knew it was something more serious and went private for scans. He was diagnosed with inoperable pancreatic cancer in November. He too lost a lot of weight in a short time, felt generally washed out and had a dull pain in his back. His GP suggested anything from indigestion to Gallstones. If the pain continues please push for them to look at your pancreas....all your symptoms sound like typical symptoms. Apparently an average GP will only meet one pancreatic cancer patient in their career so rarely truly understand the symptoms and believe 40 would be far too young to have it. My husband is younger than you and younger than him have passed away from it so it is possible. I hope you get better soon though and it proves to be nothing more than some nasty gallstones.

[J_T]

If you can,print out the symptoms from here,underline the relevant ones for you and stick them under the nose of your GP. Ask her/him do you have turn yellow before they will get you checked out. Say you are making notes of all visits and conversations had and woe betide if you turn out to be right. If you are still refused a CT walk into your nearest A&E and make like you're dying. Get some action!

http://www.pancreaticcancer.org.uk/information-and-support/facts-about-pancreatic-cancer/signs-and-symptoms

[jay]

Hi Dave,

Keep badgering your doctor, 11 pounds in 3 weeks ! I would ask to have it written in your medical records you want a ct scan and your concerns for the pancreas.

Take care Jayne

x

[jay]

My husbands ultra sound scan was fine, he had turned yellow with jaundice and after two ct scans, an mri scan, followed by two cameras down throat, a biopsy eventually diagnosed him. (took three weeks of tests)

Hes 48!

x

[PCUK Nurse Dianne]

Hi Dave,

I will email you independently of the forum with some advice, however please do feel free to phone us on the support line (020 3535 7099) as I can talk to you about the way forward and how to get things moving a little quicker for you. I am available until 4pm today, and support line usually runs from 10-4pm Monday to Friday. I will email you in the interim.

Regards,

Dianne

Support Team

[zeldazoo22]

Hi Dave,

I know this is a four year old post, but I was curious if you ever came to an official diagnosis following your symptoms? Mine are almost EXACTLY the same.

Thank you,

Seth

[toodotty]

Hi Seth,

I was diagnosed with Stage 4 PC at Easter. This was despite having 3 clear ultrasound scans, numerous blood tests which came back clear, and an 8 hour visit to A&E where I was diagnosed with constipation.

The diagnosis was only achieved after I paid to see a private specialist who immediately ordered a CT scan (with contrast) and further blood tests. I had the scan and the diagnosis within a week. All the other tests done by my GP were a complete waste of time and money. The scan cost about £800 which I thought was good value, the blood tests were about £900 but my GP put them through on the NHS. So total cost in all was about £1000, but I was in so much pain it was worth it.

If you are having any of the symptoms described, insist on seeing a Gastrologist and get a CT scan asap.

toodotty

[PCUK Nurse Jeni]

Hello Seth,

Welcome to the forums.

I am sorry to hear that you are experiencing some symptoms at present, which you equate to those of a previous poster.

How long have you been having symptoms Seth? And have you been to your gp about this? Have you been given any treatment at all?

Please do feel free to email us directly, highlighting all of your symptoms, and we can contact you directly.

Alternatively, you can call us on the number in the signature below.

Kind regards,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: nurse@pancreaticcancer.org.uk

support line: 0808 801 0707