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ogs2003 02-09-2013 07:11 AM

Cancer of pancreas or Bile duct?? help
Hello and thank you to whomever takes the time to read my story. I have just turned 45, female, recently lost weight (deliberately on a diet for the last 4 months or so), otherwise healthy with two children, one is almost 4 and the other is 9.

Ok so this rollercoaster started in the early hours of xmas day night when I woke up around 2am with quite severe discomfort in my sternum area. The pain progressed and within around 45 minutes my husband was driving me to A&E and I was in severe discomfort, I thought I was having a heart attack. On arrival I was eventually given morphine and the pain subsided. They took bloods and I was told that my amalayse was elevated (not massively apparently but they were talking about pancreatitis). I was admitted and sent for a ultra sound. This showed a dilated gallbladder but no stones. The pancreas was slightly obscured due to bowel gas. I was kept in overnight and booked for an mrcp as an outpatient. When I went home I still had discomfort in the pancreas area and also intermittent right rib pain and back pain. (I had been suffering from back ache at least a week before all this happened and also some discomfort in the sternum area (not horrendous just nagging). Anyway, I had the mrcp and it showed my pancreas was enlarged - they said in line with pancreatitis and advised avoiding alchohol all together. However, as I had continued discomfort I went back to my docs. I was send for an endosocopy and was informed I have Barretts Eosophogus (sp?) which was a shock as I had always thought this was something that appeared after years of GERD?? Apart from having heartburn whilst pregnant (3 and half years ago) I had not been aware I had reflux? although I had suffered from bloating and discomfort at times. I was given Lansoprazole to take once a day, I don't know if this is working because I wasn't aware I had GERD/Reflux in the first place?? The biopsy apparently showed no malignancy only inflammation.

I then went for a ct scan of my pancreas (with contrast). Days past and when I enquired to the results I was told the pancreas was clear with no sign of malignancy but it did show that I had a mildy dilated bile duct? I have had my blood taken on 3 or 4 occasions throughout these goings on, the last one was 3 days ago, because my bm's have now become almost grey in colour (def lost all of their brown appearance) and the continuing right side rib pain. I have expressed a fear of jaundice and this has been checked in all of my bloods, which have all come back normal (these included liver function tests) the only annomoly has been a slightly low white blood count on the last two tests which my doctor doesn't seem concerned about. So, just to be clear, my current symptoms (apart from the mildly dilated bile duct) are:

right rib pain which seems like its beneath my ribs at the back, my ribs are not sore at all, this doesn't seem to be linked to eating.
the pancreas pain has diminished somewhat although it still bothers me at times (like today)
Pale bm which are not firm but not runny either

I am very worried because I know that pc can be easily missed and have also begun worrying about bile duct cancer. When I had my u/s done 3 days ago, when the doctor finished she asked me if I had a follow up appointment and I said not yet and she said the results will take 7-10 days and I will get an appointment where I will be advised on 'management' but didn't tell me what she had seen.

I have been trying not the surf the internet because I do suffer from health anxiety at times but the continuance of symptoms and the comment the doctor made after the ultra sound regards 'management' has freaked me out again. I know that I must just wait for the results but I am finding it very hard.

Thank you again for anyone that has bothered to read my ramblings.

cabin921 02-09-2013 01:15 PM

Re: Cancer of pancreas or Bile duct?? help
Have they done a hida scan on your gallbladder to check the function ?

ladybud 02-09-2013 07:15 PM

Re: Cancer of pancreas or Bile duct?? help
You can certainly have a stone or obstruction in the bile duct without it showing up on ultrasound. The HIDA scan is a good idea, or an ERCP, a scope where they look into the bile duct and pancreatic duct. Pancreatitis is often associated with gall bladder/duct stones. If a stone is found in the duct (likely with all your symptoms) they can usually grab it and remove it, helping the whole situation clear up, unless gall bladder is full of stones too, which they would want to remove. The fact that your CT scan showed nothing abnormal in the pancreas is very reassuring. An ultrasound should not take 7-10 days for results, so I would call Dr. on Monday asking for results to lessen your anxiety.

ogs2003 02-10-2013 04:06 AM

Re: Cancer of pancreas or Bile duct?? help
Hello and thank you both for replying to my post.

I havent had a HIDA scan of my gallbladder only the ultrasound. I have been hoping this whole thing is being caused by stones as that can be solved but because I have had both the ct and the mri and there have not been any stones seen in either of these scans makes me think it cant be the case? I have read that there are two causes of bile duct dilation, either stones or cancer and as no stones have been spotted yet I cant help but think the worse. I have a telephone appointment with my GP on Monday just to go over things as they stand and will ask if she knows of any results. The very frustrating thing is that the doctor who performed the scan on Thursday obviously saw something and I just wish there wasn't all this waiting and worrying that in my case just makes things worse. I know that the ct that showed a clear pancreas is of course great news, I have also had the tumour marker blood test (ca19??) done, I don't know the actual reading but was told it was all good, but the worry wont leave me. Everyone says lets just wait and see and of course that is all I can do but at times the worry overtakes me. Can anyone advise on why, if this is stones, how they havent as yet been seen?

Thank you again for reading and replying it really does help.

NJLinda 02-10-2013 06:41 AM

Re: Cancer of pancreas or Bile duct?? help
Hi...Sometimes you can have a stone hidden somewhere in the bile ducts and pancreatic duct that an mri can't pick up. Ask for an ERCP. That test can send a scope right into the ducts to see what the blockage is. In my case, a stone was blocking it twice. Good luck

ladybud 02-10-2013 10:02 AM

Re: Cancer of pancreas or Bile duct?? help
Gallstones made up of mostly cholesterol are soft and don't contain enough minerals, like calcium, to show up on some tests, like CT and MRI, US, and 80% of stones in US are this type. I would go for an ERCP so the obstruction can be visualized and removed (or biopsied if needed) at the time.

ogs2003 02-11-2013 11:05 AM

Re: Cancer of pancreas or Bile duct?? help
Hello, ok so today I have had some good news, I called up for the u/s results and was at first told by the secretary that the results weren't back yet, I told her I was quite anxious. She called back an hour later to say the Dr had looked at my results and that there was no sign of anything nasty but that stones had been seen. She did not elaborate but said that the doctor will be writing to me etc but that they wanted to reassure me that there was nothing horrid seen. I feel very very relieved, I feel like I can live my life again. I will hopefully be in a position to ask all my questions when I get an appointment through. I want to thank you for replying to me and helping to calm my mind, I find it very touching that complete strangers take time out to help someone thousands of miles away. My sincere thanks.

NJLinda 02-11-2013 12:33 PM

Re: Cancer of pancreas or Bile duct?? help
Very happy to hear about your results! Those stones can cause pain and problems. I'm glad they found them. Did they say they will performing an ERCP to remove them? Good luck

ladybud 02-11-2013 02:42 PM

Re: Cancer of pancreas or Bile duct?? help
So glad your worries about cancer are relieved!

ogs2003 02-15-2013 07:30 AM

Re: Cancer of pancreas or Bile duct?? help
hi, as yet I don't know the next step because I have only spoken with the doctors secretary and she didn't know, she just told me he will put more info in his letter which is he due to write today (hopefully). Is it likely that they will remove them or as my symptoms have lessened will they watch and wait? Or is it likely they could well cause another pancreatitis attack? I have read that a lot of people with gallstones don't have treatment, so I don't really know what to expect. I am hoping the letter will tell me more and also that I will get an outpatient appointment with him to ask my questions...

Thanks for your good wishes and for helping me to stay calm x

ladybud 02-15-2013 10:04 AM

Re: Cancer of pancreas or Bile duct?? help
A lot depends on where the stones are. There is more urgency if any are in the bile duct compared to in the gall bladder. The fact is that you will likely go through these episodes in the future, and they may include repeats of the pancreatitis. If your symptoms have abated and the pancreatic enzymes are backed to normal, he may suggest getting your gall bladder removed, but you can probably fit that into your schedule when it is convenient. That is a better way to undergo this anyway compared to having to do it on an emergency basis when you are acutely ill from it. In the meantime, stay away from fried, fatty foods which will aggravate the situation.

ogs2003 02-15-2013 02:07 PM

Re: Cancer of pancreas or Bile duct?? help
Yes I figured as much, well I will wait and see what the details are, I have given up gluten and also dairy, probably should have done one at a time really!? I have never eaten much fatty foods and am a vegetarian so trying to stick to a healthy diet is ok and a very small price to pay to be healthy that's for sure!

Thanks again, hope you have a good weekend.

MutherTrucker 03-28-2013 06:58 PM

Re: Cancer of pancreas or Bile duct?? help
Hi there, I am extremely glad that it turned out so well for you, but in reading your story I felt that I should bring one note to the attention of you and others like you. You mentioned that you had a CA19-9 tumor marker test and it was "all good" as you put it I think. That particular test in NOT reliable! My husband has advanced Pancreatic Cancer and the highest his tumor marker ever got was 105 and he was tested monthly while undergoing his treatments. His original tumor marker was only 20 which is well below the "normal" range when this all began in July 2012 and now in March 2013 he has less than 6 months to live according to hospice's estimates. Please, for all who come to this post, do not hold much stock in that tumor marker test. The only true way to know if it is Pancreatic Cancer is to have a CT with contrast and exploratory surgery to determine the stage, along with biopsy to prove or disprove malignancy.

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