A forum for any other issues around pancreatic cancer

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fifi
Posts: 12
Joined: Tue Oct 24, 2017 11:01 pm

reliability of CT scans

Postby fifi » Fri Oct 27, 2017 11:28 pm

Hi everyone. I know I'm perhaps being paranoid but I am so worried that I have pancreatic cancer. Over the last 2 months I have had a significant loss of appetite, weight loss( about 5kg) some nausea and a strange burning discomfort in epigastric area. Bowels also have been really up the creek with multiple trips to the loo (brown but quite loose), and a constant feeling of needing to go almost. At first I suspected bowel cancer but the results from my colonoscopy were fine. So then I started fixating on pancreatic cancer as there is some cross-over in the symptoms. Eventually I ended up in A&E with pain and nausea ( was it all in my head?) and they kept me in overnight and gave me a CT scan with contrast the following day. I live in New Zealand by the way - I don't think this would have been offered to me in the UK.
The results from the CT scan came back all clear - I could hardly believe it but after a few days I began to fear the CT scan might not have picked it up as I know they are not 100% reliable. Does anyone have an experience of a false result with a CT scan? Should I just trust it? Many thanks for your input.

BlacJAC
Posts: 46
Joined: Thu Oct 29, 2015 8:14 pm

Re: reliability of CT scans

Postby BlacJAC » Sat Oct 28, 2017 12:38 pm

Lets say there was something going on and taking into account your weight loss, It's more likely to be your gallbladder than your pancreas. You don't need to have pain for there to be a GB issue. Because your CT was clear, I'd maybe see about getting a GB function test. A sluggish one can cause very similar issues too. I have around a 30% functioning one (if i recall correctly and I may be out with that figure). Some of my GI issues have been attributed towards that, but even though it was discussed at one point that it would need removed, nothing was ever done.

All my scans never showed an issue with the GB. In fact, it looks perfectly healthy with no stones, but the dye test I had told a different story. Forgot the name of the scan as it was so long ago.

fifi
Posts: 12
Joined: Tue Oct 24, 2017 11:01 pm

Re: reliability of CT scans

Postby fifi » Sat Oct 28, 2017 8:01 pm

Thanks BlacJAC for your reply. I forgot to say they did say I had a gallstone but there was no inflammation and no bile duct dilatation. Many people have gallstones and it causes no problems.
Why is this thing so hard to see? I have so many symptoms and I am losing weight daily even though I am forcing myself to eat.
Has anyone else's PC not been picked up the first time by a CT scan? HELP!!!

BlacJAC
Posts: 46
Joined: Thu Oct 29, 2015 8:14 pm

Re: reliability of CT scans

Postby BlacJAC » Sun Oct 29, 2017 11:52 am

Of course people have had CT scans that have failed to pick up anything whether it's been the pancreas or not. Only for there to have been an issue. All tests/scans will have some sort of failure rate attached to them. It's how things work. However, the likelihood of there being nothing is greatly increased. What would you seriously gain from someone coming in and telling you they had a CT scan that failed to pick up their cancer? Will freaking out help your situation? I'm not being mean or brushing away your concerns as I can completely relate to your situation as I too was looking for people to discredit any and all tests I was having done. In some sort of twisted way, I wasn't seeking reassurance, I was seeking people to discredit my GP/specialist(s).


The gold standard test iirc for pancreas issues is an ERCP, but almost all doctors would refuse to give you one unless there was a very good reason to do one. Like there was some sort of prior evidence or an area of concern as the procedure can cause pancreatitis.

I had one and the private GI I saw when it showed up nothing was seriously concerned why I had received one when there was nothing to warrant the procedure. He stopped short of calling it negligence I think but you could see he was taken aback by the fact i had had one.

As I've said on here before, I had a few red flag symptoms weight loss, steatorrhea, swollen nodes, amongst other things, but it wasn't my pancreas. I know now that my weight loss was down to anxiety. The fact you're forcing yourself to eat means you aren't eating properly even though you can't and won't currently see it like that.

As 2 GI's said to me unintended weight loss is a common side effect of anxiety as our dietary intake tends to change drastically even if we do think we're eating "normally". If you were eating normally they'd be more concerned about that.

Keep seeking answers as it's the least you deserve. But there really is no point going for tests that won't alleviate your fears as you'll not change anything. Think what tests would put your mind at ease and enquire about them. A CT scan is still a good tests regardless of what you currently think.

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: reliability of CT scans

Postby Dandygal76 » Mon Oct 30, 2017 10:15 am

Thank you BlackJac for always coming on here and sharing your experiences. Online in group chats many have stated they find it difficult to cope with these queries when dealing so deeply with PC. We must always be open to the possibility but you sharing your experiences is immensely helpful.

Fifi - it would be highly unlikely the CT scan missed something (especially once symptoms of PC start in the manner you suggest) and the nurses helpline will help you far more than we can. You have got to a point they have medically eliminated PC to be honest and you need to seek alternative solutions to your issues.

DG

fifi
Posts: 12
Joined: Tue Oct 24, 2017 11:01 pm

Re: reliability of CT scans

Postby fifi » Wed Nov 01, 2017 2:18 am

Hi Dandygirl and BlacJAC. Sorry I have just seen your posts. I think there is a lot of truth in what you are both saying.
Since I last posted I have been to a gastroenterologist who suggested doing a gastroscopy and an MRI. He personally said he didn't think it was PC and he said after that there were
No more tests we could do so we should look at ways of managing the symptoms.
I told him not to use the words
IBS/anxiety but I am sure that is what he is thinking. The gastroscopy showed nothing and I am having the MRI in a week's time. Meanwhile I have booked myself an appointment with a CBT therapist because it's more likely I guess that I have hypochondria.
I feel immensely sorry if I have upset any one on this site for my silly questions.

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: reliability of CT scans

Postby Dandygal76 » Thu Nov 02, 2017 4:08 pm

Honestly Fifi please do not eliminate the possibility of IBS. My partner has suffered with gastric symptoms for years and he is still sat here being a complete pain in the arse with no terminal diagnosis. Have you looked up the FODMAP elimination diet? If your symptons are that bad then please do it strictly and see if it helps, we really did identify food types his body does not agree with and / or he has selective issues when I don't cook him food he likes! If you can find your triggers then it can be really helpful. Unpasteurised (raw) milk also really helped him.

x

fifi
Posts: 12
Joined: Tue Oct 24, 2017 11:01 pm

Re: reliability of CT scans

Postby fifi » Thu Nov 02, 2017 8:22 pm

Thank you Dandygal for your suggestion and other people too have suggested this but my symptoms point so heavily to PC:
A gnawing, heartburn kind of pain in epigastric area
Occasional nausea
Loss of appetite
Change in bowel habits - going more frequently, loose stools, constipation.
What is strange is they all came on in the space of one week in early September. Since then I have lost 8 kg. If I have PC it can't be in the early stages as I am strongly symptomatic so why has nothing shown up on the CT scan (with contrast)? I have read over 40 case histories from the 2 main PC charities in the UK and in 3 or 4 cases the CT scan came back as clear initially.
Also I've just found out that my GGT level (LFT) is continuing to rise from 35 beginning of September to, to 63 beginning of October and now 78 just a few days ago. This shows liver enzymes are disordered.
I am frantic. I am having an MRI in a few days time but after that what else can I do other than wait for my symptoms to get worse until they pick it up?

BlacJAC
Posts: 46
Joined: Thu Oct 29, 2015 8:14 pm

Re: reliability of CT scans

Postby BlacJAC » Fri Nov 03, 2017 12:11 pm

Hi Fifi, I think you kinda misunderstood DG's previous point. You posting here isn't stressing people out, just a case most have enough to deal with without giving the 'what ifs' their time and effort and the added stress that would entail. Everyone here would give anything to be in your position whether it be for themselves, a family member or friend. Some of the people took the time out to answer my initial queries when they didn't need to and had enough to deal with themselves. It was them that gave me the boot up the backside i required and probably pulled me back from the edge as I was suffering greatly from very bad mental and anxiety issues. Something i will always be eternally grateful for because in some small way, they saved me from myself. Health anxiety isn't anything to be sniffed at. It can become debilitating and isn't a nice place to be at.

If your MRI comes back clear which it probably will, have them do a GB function test. A sluggish gallbladder can and does cause those very symptoms. Not only the GB, but food allergies and food intolerances. They are the more likely culprits in the absence of anything untoward regarding your pancreas. Thyroid issues can cause your symptoms too. Have you had that checked?

Weight loss is always better to be investigated, but anxiety can cause a lot of weight loss. I lost 4st in a few months. I'm not insinuating it's all in your head because like my symptoms were/are they're very real.

Waiting on appointments and test results is just the worst. Even people who are ill said the stress involved in waiting and appointments are right up their with any condition they may have.

sandraW
Posts: 1033
Joined: Thu Oct 31, 2013 5:38 pm

Re: reliability of CT scans

Postby sandraW » Fri Nov 03, 2017 8:37 pm

Hi BlacJac
I am glad my fellow forum posters could be of help in some way for you. As you say it is very hard when we are going through what most of the posters on here are going through,or have been through with this insidious disease. We certainly don't wish to be unkind in any way, that is not in the nature of this forum, but as you say we would all give our back and front teeth too to be in the position you and Fifi find yourself in. I wish you continued better health and I hope Fifi that you get some answers very soon and start to feel better take care Sandrax

Quickasyoucan
Posts: 112
Joined: Tue Jan 17, 2017 10:06 pm

Re: reliability of CT scans

Postby Quickasyoucan » Sat Nov 04, 2017 12:24 am

Hi Fifi. I lost my dad to pc this year. He did not have any symptoms until the cancer was large enough to block his bile duct and clearly visible on ct. I have many of the symptoms you mention except the weight loss (!) but mine are due to a combination of anxiety, grief and ibs plus the onset of peri menopause which has brought the joy of gastric pain and bloating. I am assuming you are female from your name could hormonal issues be a contributing factor to new symptoms. I think you have to have faith in the ct. of course there are rare missed diagnoses but pc like ovarian cancer is one of those insidious diseases that is usually only symptomatic at an advanced stage from what I understand. I hope this gives some comfort

fifi
Posts: 12
Joined: Tue Oct 24, 2017 11:01 pm

Re: reliability of CT scans

Postby fifi » Thu Nov 09, 2017 6:06 pm

Hi all. Thank you for your contributions to this thread. Just to add some more information here - the MRI has revealed a 4mm cyst adjacent to the main duct in the tail of the pancreas. In the report they say it is probably an IPMN and to have a follow up MRI in 1-2 years. Now this has left me perplexed and still worried as it appears some IPMNs can turn out to be malignant. It's the fact that this thing is there plus more than anything the continuing symptoms- intermittent pain and nausea plus lack of appetite, weight loss and constipation that concerns me. My initial reaction is I now want an EUS to get a biopsy and find out what it really is. This nightmare never seems to end. I know you guys are not medics but any thoughts on this would be much appreciated. Thanks.

fifi
Posts: 12
Joined: Tue Oct 24, 2017 11:01 pm

Re: reliability of CT scans

Postby fifi » Thu Nov 30, 2017 10:30 pm

Hi All, it's been a while since I last posted. To keep you up to date after a week's stay in hospital following acute pain and nausea, I was given an EUS - the gold standard of pancreatic imaging which confirmed a 4mm benign looking cystic lesion in the tail of my pancreas. No biopsy could be performed as it was too small. My health continues to deteriorate with constant burning, gnawing epigastric pain, extreme constipation/ or frequent,fatty stools, night sweats, and daily nausea. I continue to lose weight despite better appetite now. I am taking codeine, laxatives, anti emetics every day in order to cope. I think what I have is something quite rare called undifferentiated (anaplastic) Pancreatic adenocarcinoma, a variant of classic ductal carcinoma which has been known to mimic branch duct IPMNs which they think my cyst looks like. My very last diagnostic test that I have arranged is to have a PET scan in the 'hope' that this will finally reveal its malignancy. I say hope only because without this I can get no further medical help. Let's just presuppose that I am right about what I have (we all know how often doctors misdiagnose PC and how difficult it is to diagnose). If the PET scan shows malignancy (with or without mets) what can they do next anyway without a biopsy? The lesion on the exterior is only 4mm. If it is an adenocarcinoma it will be bigger on the inside. But without a biopsy I cannot get any chemo or even any nerve block when the pain gets worse. Would they operate just so they could get a biopsy? I am scared because I feel that even if this PET scan shows the presence of cancer, without a biopsy I won't be able to access anything in the way of medical help. of course
I will let you know the results as soon as I can but in the meantime does anyone know what would happen in this scenario?
Incidentally, having consulted many health professionals over the last 12 weeks and had numerous other checks like gallstones, Ceoeliac disease, etc,not one of them can come up with a diagnosis other than IBS/anxiety/indigestion.

Dandygal76
Posts: 754
Joined: Sat Mar 12, 2016 9:49 am

Re: reliability of CT scans

Postby Dandygal76 » Thu Nov 30, 2017 11:01 pm

I am going to bullet this bluntly...

- You don't have pancreatic cancer
- Numerous medical people have already confirmed this
- A weeks stay in hospital has confirmed this.
- You do not need a biopsy to confirm pancreatic cancer for chemo treatment. You are not offered chemo treatment because you do not have pancreatic cancer (even the rare form you think you might have). People have chemo without a biopsy because the dr's know what they are looking at.
- A 4mm pancreatic cancer 'cyst' would not create your symptoms - but I reiterate you do not have pancreatic cancer anyway.
- I think you need to go to the anxiety websites or IBS ones as your drs have suggested who have years more experience of this than you.
- I think your continued posting is disrespectful to those fighting and off putting to those who have concerns not yet diagnosed as benign.

DG
Last edited by Dandygal76 on Fri Dec 01, 2017 8:40 am, edited 1 time in total.

Didge
Posts: 825
Joined: Sun Dec 29, 2013 10:35 am

Re: reliability of CT scans

Postby Didge » Fri Dec 01, 2017 8:25 am

Fifi, this is what sometimes happens here. Someone is worried that they have PC and their docs are concerned too so they are having some tests. They then get the all clear and often say they feel guilty for getting good news when so many on here have such a dire prognosis to deal with, either for themselves or their loved ones. We say don't feel guilty, we are so glad that they don't have to deal with this most devastating cancer. We are very happy when someone is given the all clear. And we are very happy that you don't have it either. Hypochondria is not a term of abuse, it can ruin lives and you appear to be suffering from an extreme case of it. Clearly you are not well but this is not the forum for you to be posting on. Please direct your enquiries to more suitable forums if you must engage on forums at all, although it doesn't seem to be helping you. Listen to your doctors (and your husband) and get your life back on track. Good luck.