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

Re: My convoluted diagnostic thread

Postby BlacJAC » Tue Dec 29, 2015 11:38 am

Hi Rachel, thank you very much for your email, it helped a lot. The pain went away after 2 days and I'm only left with a little bit of swelling. I think the really frustrating part about all this is it was so close to all the holidays and now have to wait longer than I would probably have to have waited at any other time.

Maybe it's just me, but I loathe waiting for test results because it puts me on edge. I'm fine with appointments, getting scans etc, it's the waiting and not knowing.

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Wed Dec 30, 2015 12:51 pm

Called my GP today on the off chance they may have the pathology results back and she called the hospital as there is a report waiting when she accesses the hospital database, but can't get into it for some reason. The ENT secretary is gonna call me back tomorrow as she also confirmed there is a report there, however, she can't get into it too, so will speak to the consultant tomorrow.

Hugely frustrating all round. I suppose considering the time of year and me being told I probably wouldn't receive them until after the New Year, at least it's been done in a timely manner.

My bowel habits have been normal and normal brown for a good while until i drank a Costa coffee the other day (first one for weeks/months) and that upset my inners for 3 days and it was back to the pale stools and loud rumblings again. It's settled today. Didn't appear to be any steatorrhoea. Really have nailed it down to 4 things thus far - Pizza, Costa coffee, anything creamy(sauces etc) and milk chocolate.

On a side note, I really hope no one minds me posting here due to me not having had any sort of diagnosis thus far, especially when almost everyone here has been through/going through or has a loved one going through such an awful time with this disease. This is the only place I can vent and write my concerns down. I have nowhere else to turn for advice and the advice I've been given has helped me immensely over the last month or two.

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: My convoluted diagnostic thread

Postby Didge » Wed Dec 30, 2015 1:29 pm

I always think that if it is really bad news they call you when they have the results so hope that is the case. Even if they can't access them on the computer the person who put the report on will know the results. I know my partner was called in as soon as the GP received his scan results and was put straight to the head of the queue at the surgery, so he basically knew what was coming. I don't mind you posting here but there is danger in engaging with a pancreatic cancer forum and that is that for us, all the symptoms have ended up being PC but that does not mean that these symptoms ALWAYS mean PC. In fact we have had others like you who have been on the forum with worrying symptoms and they have turned out not to be PC. Anyway, do keep us posted and I hope everything turns out not to be serious! Happy New Year, BlacJak!

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Fri Jan 01, 2016 2:26 pm

Thanks Didge

The consultant wasn't in again yesterday and they think the file is corrupted. Have to wait until the 6th now.

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Tue Jan 19, 2016 11:45 pm

Hi everyone. I think they're beginning to put the pieces together now. Something auto immune, but they're still not entirely sure. They think whatever it is was triggered by a bout of salmonella i had 3 years ago (was hospitalised for 2 days and diagnosed as having it). As I've mentioned previously, my toilet issues have been around for "years" rather than mere weeks or months. Issues that have been greatly masked by the codeine.

I'm supposedly more likely to get diabetes, arthritis and some other nasties. My body isn't great with fats and is struggling to absorb them so I'm not sure what's happening with all that. The doctors still aren't sure if it's directly related to my pancreas (although all function tests and scans have been normal as was my stool test) or if the issue is with my small gut. No one knows yet and I've to get further tests. The pancreatic doctor I saw mentioned the pancreas isn't the best organ to view due to its position. The only real way to get a proper view of that is to go in and the risks far outweigh any benefits from them even attempting to do so. Even going into the ducts is supposedly too risky when all tests have been coming back clear.

To date I've had a CT with and without contrast, node biopsy, US, ERCP and a host of other things.

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Mon Feb 01, 2016 1:53 pm

Hi, really looking for some advice and would greatly appreciate any. As i said above, I am struggling to absorb fats and this is beginning to take its toll on my general health. I reckon I'm not too far off being classed as anorexic (i have lost so much weight), but my GP just isn't being forthcoming with any solutions. With all my pancreatic counts and scans being considered normal, she doesn't think any sort of enzyme therapy is appropriate in my case.

Is there a chance this could be something like chronic pancreatitis, but it's just not showing up properly yet? She seems to think this would have shown up on either the CT or ERCP to some extent. Her only solution has been eat more fats. When i eat more fats, my toilet issues get worse.

This is basically my daily diet to regain weight:

All Bran/Special K with a sliced up banana (semi skimmed milk), followed by 1 Egg and bacon roll (mornings)
4 bags of crisps
1 bar of chocolate (galaxy)
Main meal at night: Beef and vegetable soup, with added chicken breast along with pate on 2 slices of wholemeal bread
And pieces of fruit here n there.

My appetite is changing too. I could eat continuously if i wanted too. I feel hugry most of the day.

I simply have no idea how to regain weight or to even stabilise it now. I also find it difficult to believe there can't be something major somewhere within my body going wrong. I have just been given maybes, could be's and whatever else they can palm me off with until the next time. I just need my weight to stabilise at the very least.

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: My convoluted diagnostic thread

Postby Didge » Mon Feb 01, 2016 3:52 pm

BlacJac I am not a doctor but as far as I know creon is harmless but you do need a prescription.

Could you ask for a second opinion? You can get them with a private prescription if necessary. And if you are not absorbing fat you are right that eating more is not going to increase your weight, just cause you more toilet issues as you say. I think you need to keep fighting to move this forward until you get answers! Good luck.

J_T
Posts: 954
Joined: Sun Mar 24, 2013 8:15 am

Re: My convoluted diagnostic thread

Postby J_T » Mon Feb 01, 2016 3:59 pm

You need to get the faecal elastase test. It's the only way to know for sure you need Creon. Insist on it.

My husband's oncologist was convinced he didn't need Creon but said he was happy to do the test. We prevaricated for a few weeks because we thought our onc would be right, then he had it. He needed them.

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Mon Feb 01, 2016 4:36 pm

Hi, thank you very much for the replies. Very much appreciated.

Thinking about joining another GP surgery and see if I can get a different perspective on this and ask about Creon, but I've got a haematologist appointment mid February. The reason being my GP wants my bloods to be thoroughly tested to see if more specific tests can spot what everyone else are missing. About my bloods, the only thing that's been ever so out sync regarding the pancreas and liver was my last Amylase count was 20 (normal 23-85). I asked both my GP and GI doctor about this and they said it was nothing they were concerned about. Counts change all the time and the GI said better being 20 than being at the high end of the scale. He sees those slightly low counts in a lot of patients with no pancreas issues. That's really all there is.

Sorry if this is considered crude, but I literally have no butt cheeks. Muscle and skin is all that's there. My new jeans are 28" waists (belt required), down from a snug fitting 34" last October. Even in my teens I hovered around a 30" waist. No mid-life spread whatsoever.

Edit: J_T I just noticed your comment about the faecal elastase test. I had a stool test and they said everything was normal. However, I have no idea what the actual stool test was for. May have been a bowel screening test looking for occult blood or may have indeed been for fat content. Will actually ask about that. It was the GI doctor that ordered one. I did once ask my GP for one and I got the feeling she thought I was being a little bit weird asking for one. She kinda gave me that look (eyes opening wider and jerking her neck backwards)people give when they think "what the hell is he going on about". About the only test I haven't had done thus far is a colonoscopy as I haven't had any blood, ridges in my stool and when they're kinda normal, they're not thin. No idea how your husband felt, but the faecal test has been the worst one for me. I was really embarrassed handing that over. In the grand scheme of things it shouldn't have bothered me, but I felt degraded a little.

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: My convoluted diagnostic thread

Postby Didge » Tue Feb 02, 2016 10:33 pm

I would definitely ask about the faecal elastase test. As you say, there are numerous stool test they can do. And I do know what you mean about the embarrassment even though we shouldn't be. In fact, to inject some black humour (I hope) into the discussion, when I'm having a bad day at work, I think "well I could have a worse job. I could be the person who checks stool samples!" and imagine how the conversation goes at parties: "What do you do for a job?" "I test poo". Sorry! But BlacJAC you do need to continue if your weight is that down. Take all the tests offered and hopefully the next blood test helps but if not keep pushing until you get answers.

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Mon Feb 22, 2016 10:34 am

My results from my HIDA scan (I think that's what it was called or it could have been a PIDA) came back and my gallbladder is working at 33%. I've to see my GI in a couple of weeks to discuss the results. Not really sure what that means? Strange that nothing has shown up on any other test regarding my GB - stones, inflammation etc. I've tried looking it up on the net and it seems some doctors consider 30> 'normal', yet others 35%> and 40%>. I simply don't have the typical GB symptoms such as pain after eating. I have a very slight URQ pain, but it's more or less always there and isn't aggravated further by anything. The GI thought it was referred from my back or muscular.

As per usual me looking stuff up on the net, i have little or no idea how to interpret that information. I would have assumed 100% would be normal, yet it states most healthy people have a GB function sitting around 70%, again depending on the site you read.

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Tue Jun 28, 2016 10:34 am

An update on my situation.

I've been put on the waiting list to have my gallbladder removed due to the low function. Whilst they're doing that, it has been recommend that I have a biopsy on both my liver and pancreas (this is wholly dependant on whether they can access the organ during the procedure without turning a straight forward op into something else).

A while ago I mentioned my lymph node enlargement and the proceeding removal of said node, URQ pain etc and my referral a few months ago to a haematologist. After seeing the haematologist for a 2nd time, it has been suggested I may have AIP (autoimmune pancreatitis)due to my IgG4 serum being at the high end of normal. Everyone I've seen thus far have gone to great lengths to state my pancreas looks normal, so if I did have this issue, any damage to both my liver and pancreas has been minimal at worst.

No idea what all this involves, the outlook etc because rightly or wrongly, I've simply decided to bury my head in the sand until i have some firm answers.

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: My convoluted diagnostic thread

Postby Didge » Tue Jun 28, 2016 11:46 am

Hi again BlacJac. As long as the questions have been asked, burying your head in the sand until you get the answers to those questions seems very sensible! The alternative is to worry yourself stupid for no reason. Good news that your pancreas looks normal and I hope you are feeling OK.

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

Re: My convoluted diagnostic thread

Postby BlacJAC » Wed Jun 29, 2016 11:44 am

Hi Didge, I'm doing fine and I hope you're keeping good too.

My main concern about the biopsy on the pancreas is the risk of getting an attack of acute pancreatitis. Whilst it was explained that the risk is small (not sure how small), it is something that is concerning me. I'd prefer to take the wait and see approach because acute pancreatitis sounds horrendous and for what? Obviously my opinion on this would change if they spotted something that warranted a biopsy.

Didge
Posts: 794
Joined: Sun Dec 29, 2013 10:35 am

Re: My convoluted diagnostic thread

Postby Didge » Wed Jun 29, 2016 3:05 pm

I am only familiar with biopsies on tumours and even those can differ depending on which little bit gets taken. What would a biopsy on an apparently healthy pancreas (and liver) be testing for? Acute pancreatitis is serious but treatable as,far as I know but perhaps you need to ask more questions if you are undecided (although it sounds as if you are happy to leave it for now). Didge