My convoluted diagnostic thread

[BlacJAC]

Just a small update. Well, where to begin ...

A few days after posting my last post, a pea sized lump appeared just above my left collar bone and when my gp felt it she immediately uttered the words "Not good". Not googled anything as i promised myself I wouldn't so I could be wrong with the terminology here, but she said the area is commonly referred to as the Virches window - is that correct? That it drains from the gastric chain of nodes. It's not from the stomach anyway as i just had a camera down there recently, and that was all fine. I was immediately sent for a chest xray the same day and my lungs are clear as is everything else.

I'm past worrying about all this now. I just want a diagnosis one way or another. I'm booked into have the node removed on Tuesday next week as she said FNA's (think that's the term) rarely pick anything up.

Because the Xray is clear, she said there's a possibility it could be lymphoma. Can lymphoma cause issues with the pancreas? Pretty sure when i was reading all the rubbish on the net it said the pancreas was a gland, but not sure if it's the same sort of gland as the lymph system or not.

Not been itchy, not had any night sweats, coughs and so on. Bloods are also all fine because i had yet another damn one last week. Feeling like a pin cushion now. All inflammation markers are normal. My Vit B is ever so slightly on the low side.

[Didge]

Just wanted to say hope all goes well with the removal of the nodule today and you have a diagnosis of what is wrong soon. Didge x

[PCUK Nurse Rachel C]

Dear BlacJac,

My name is Rachel and I am one of the nurses that works on the support service. Thank you so much again for sharing your experience, however I’m also sorry to hear that you are experiencing more symptoms and are having to go through more investigations!

Just in reference to your question ‘can lymphoma cause issues with the pancreas’ the answer is that unfortunately lymphoma can occur anywhere in the body including (but I am pleased to say), very rarely, the pancreas.

Just as a word of reassurance, however, swollen lymph nodes are usually a sign of infection and usually go back down when the infection is clearing up. BlackJac, I do also hope that this is what is happening in your case?

The NHS Choices website describes how lymph nodes commonly look like pea-sized lumps of tissue and contain white blood cells. Their role is to help to fight bacteria, viruses and anything else that causes infection within the body and that they play an important part in the role of the immune system.

These lymph nodes can sometimes swell to more than a few centimetres and this is usually in response to infection or disease, such as a common cold or glandular fever. However, less commonly, swollen glands may also be caused by a non-infectious condition, such as rheumatoid arthritis or even cancer.

NHS Choices have a really good website in relation to lymph nodes and especially in relation to when you should definitely seek medical advice, so please feel free to access via the link below:

http://www.nhs.uk/conditions/swollen-glands/Pages/Introduction.aspx

I must say BlacJac, and apologies for not finding this out…in relation to the ‘Virches window’ I have never hear of this term and have been unable to find anything about it!

Best Wishes,

Rachel.

Pancreatic Cancer UK Specialist Nurse.

Support and Information Team

[BlacJAC]

Hi, got the node out today and it's unlikely I'll get the pathology back before the New Year.

The area is actually called the Virchow's node, my bad. It's not a usual area for any sort of node enlargement and when one is located (from the ENT doctor i quickly saw today said) it's almost always a cause for concern regardless of size or texture in an adult. The specialist also said, the same holds true for the right side too. Infections such as TB can also enlarge those nodes. Not got TB though. Collar bone nodes harbour all the bad stuff.

Here's a link to the wiki page regarding the area: https://en.wikipedia.org/wiki/Virchow's_node

All that aside, the actual procedure was fine as they numbed it using local and I just felt a tugging sensation. Now though, it's sore. A really squeamish sharp sort of pain. Feels a little bit similar to tearing a muscle when i move my neck in certain directions.

[PCUK Nurse Rachel C]

Dear BlacJac,

Thank you for the update in relation to your care and also for the web link in relation to the Vichows Node....I will certainly have a look at this!

Unfortunately, you are right, it is unlikely that you will get any results back before the New Year and I know that waiting on results can be a very worrying time. I am also just aware that at this time of year, a lot of services may also close, so please do not feel alone. Should you wish to discuss anything with us, then feel free to call or email our support services over this period.Free phone 0808 801 0707.

Jeni has just put a post up with our Christmas opening hours, so please do not hesitate to get in contact.

Blacjac, I will also email you separately on some of the points that you raised in your post. I hope that this is ok?

Kindest regards,

Rachel

Pancreatic Cancer UK Specialist Nurse.

Support and Information Team.

[BlacJAC]

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]

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]

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]

Thanks Didge

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

[BlacJAC]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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

[BlacJAC]

I have no idea Didge what biopsies are required for. Assuming with AIP there must be changes within the tissue.

I just had it explained to me that biopsies are required for a diagnosis of AIP 1 or 2. Normally done via an ERCP, again if i recall correctly, but because I need my gb removed, this will be a case of two birds with one stone. They do not think I have the first one as 2 GI's have stated that manifests itself in a very similar fashion to PC e.g. lesions/tumours/duct blockages and that's something i have no evidence of thus far. AIP 2 is more difficult to detect because it seemly manifests similar to chronic pancreatitis. I hope I'm recalling all this correctly.

AIP 1 is a multi organ condition and AIP 2 usually just involves the pancreas and maybe the saliva ducts.

[BlacJAC]

Hi everyone. My stress levels are back and my diarrhoea has been back with a vengeance for the last 3 weeks (not pale, brown and sinks to the bottom of the loo after a few seconds). Even though I no longer eat much fats. So much so I decided to actually go private and see a GI consultant for a 2nd or is it now a 5th opinion?! Not really sure now. After looking through my scans and records, he's questioned why I'm getting my Gallbladder removed when there's zero evidence of stones or inflammation. Which leads me on to the next thing, he's astounded I haven't had a colonoscopy, yet had numerous scans and tests. So he's written to my GP recommending I get one before any GB removal. He also stated I shouldn't have had an ERCP because those should only be used as a last resort, to obtain 'further' information on a condition already suspected via US/MRI/CT or to fit stents etc. He's actually surprised this was given the go ahead by the doctor doing the procedure.

As for the pancreas thing, he said everything he can see from the scans is encouraging. He thinks if the colonoscopy comes back clear this all should be chalked down to IBS-D. So it seems I've wasted a wad of cash just to be told I may have IBS.

I simply can't believe IBS would make me feel this awful and have such an impact on what foods i can and can't eat. With my cant's considerably larger than my cans list

[BlacJAC]

Hi, I had a colonoscopy done yesterday and had it done privately as I was gonna have to wait until the new year had i waited on the NHS. All i have to say is "OMG, the prep!!" THE PREP! It was awful. Even after reading all the hints and tips on the net, I thought my entire GI tract was on its way out at one point. If i never have to do that again it will be too soon. Other than feeling like crap (completely washed out like you feel after having a bug and walking like John Wayne having just stepped of his horse), the actual procedure was a cake walk. It's as if my body was ridding itself of food that I had yet to eat.

They found 3 polyps, 2 of which are said to be fine, with the 3rd firmly in the "not too sure" category. They were all removed. They noted there was irritation down the descending colon, but they don't think it's Crohns or UC, but they took a sample or two anyway. It's probably a result of the codeine and poo remaining longer than normal.

They are now 99% sure the pain in my upper right side that goes through to my back is down to my colon. It was mentioned I have a very tight curve in my colon compared to most people. So if i get constipated, it will affect that area due to the gas build up. However, I'm of the opinion that my toilet habits have been regular for the last year insofar that I haven't went a day without going and what i've produced isn't a small amount, just normal. But i suppose the irritation doesn't lie.

Not unduly worrying about the dodgy polyp because what will be will be. I just don't want to ever drink that horrid stuff ever again. I'd be more worried about that than them going back in to remove more.

[PCUK Nurse Jeni]

That all sounds positive Blacjac.

Good to hear that things are being investigated and that a potential source for the pain seems to be found.

Lets hope you will not need any further procedures.

Take care,

Jeni.

Jeni Jones

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[BlacJAC]

Hi everyone this will be my very last update as I've spammed this forum enough and I feel for now I have reached the end of my diagnostic journey.

The pathology report came back for the polyps that were found and subsequently removed during my colonoscopy. Two were normal, the 3rd was found to contain pre cancerous cells. The actual name escapes me, but the term began with the letter 'A' that is better used to describe the type of polyp found. During this journey (now little over a year) i have lost around some 3 stone with some of that weight loss being easily attributed to anxiety/worry and hopefully the rest being down to my overhauled diet (my body is happy with around 1400-1500 cals a-day), having completely removed fried food, pizza and any other garbage you can think up. Fruits, fibre, protein and carbs are now my staple.

Anyway, the consultant I saw stated he was 100% confident that the entire polyp was removed and that the actual stalk of the polyp contained none of these cells, so not chance of those cells coming into contact with the wall of my bowel. Talking a step back from all this, it's obviously been a blessing in disguise that I have pushed and harassed both all the GP's and consultants I've seen over the last 14/15 or so months. Initially convinced myself I had PC only to be fobbed off with an initial diagnosis of IBS, yet they found something I never once suspected or gave a second thought about. Thankfully I pushed and pushed and because of this I have dodged that particular bullet for the time being. I am so thankful I was in a position to pay for these tests privately and without that money, I could have gone on to develop colon cancer. It's wrong that it should take having some spare cash before you receive potentially life saving tests and consultations, but I suppose it is what it is. To finish up on this subject, I now have to get checked at 2 yearly intervals for the foreseeable future, so more prep for me (YAY!).

I would like to thank everyone who has taken the time out to help me and to the nurses who's time would have been better focused elsewhere. Thanks!