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Early days...


Lori
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Hello everyone, I'm new here and thought I'd share my journey so far...

I'm a 48 year old women, I started having stomach pain at the end of March, it continued to get worse, and spread to my back and by May I asked to see a specialist. I went for an endoscopy that week and was told everything looked fine, I was prescribed Lansoprazole to reduce my stomach acid. I took that for a week and when it didn't seem to help I was told I probably have IBS then so instead I should take Amitripylene.

I started that new medication reluctantly, but then within a coupld of days I went jaundiced. My eyes were yellow, my urine was dark brown, and my stool was pale grey. I ended up in A&E, after a CT scan was told I likely had a gallstone. The next day I had an ercp to remove the stone, but there was no stone, They needed however to put a stent in the double blocked bile duck. The conslusion was that potentially the stone passed on it's own and we are dealing wih inflammation, or there is something more wrong - we did a scan a week further that confirmed something more was wrong - I then went on to have an MRI, PET, EUS with biopsy, and I was officially diagnosed yesterday. I have a three centimeter tumour in the posterior head of my pancreas which seems to be contacting the smv. The big challenge is this vascular contact - it's unclear from the scans how much of an issue it is. 

Tomorrow I go to see the surgeon and he is going to make a recommendation basked on feedback from the mdt, and all the scans - do we try to downgrade the tumour first with chemo, or do the Whipple procedure now then chemo.

Has anyone else faced something similar? What are your thoughts? I'm nervous that the chemo may not work, and may make me too weak to have the surgery... I just feel I'd prefer to get the surgery over and down with... although some say that having chemo gives better results - ahhh so much info to take in. I'd appreciate any comments, thoughts, or just a hello - you are not alone!

Thanks,

Lx

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42 minutes ago, whykel said:

What was your stomach pain like? 

It wasn't too bad at first. I could still function at work, by just pushing through. It was similiar to the cramps I get with my monthly menstral cycle, perhaps a bit worse. Then the pain started wrapping around my back, and that was really uncomfortable. I went to see a chiropractor, and we couldn't get the pain to go away so he suggested their could be something else going on. More recently the pain has become unmanageable, so now I'm working with a pain management consultant to find a balance of pregabalin, and morphine slow release tablets (mst) to keep me functional but not drowsy.

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irnbru1980
22 hours ago, Lori said:

Hello everyone, I'm new here and thought I'd share my journey so far...

I'm a 48 year old women, I started having stomach pain at the end of March, it continued to get worse, and spread to my back and by May I asked to see a specialist. I went for an endoscopy that week and was told everything looked fine, I was prescribed Lansoprazole to reduce my stomach acid. I took that for a week and when it didn't seem to help I was told I probably have IBS then so instead I should take Amitripylene.

I started that new medication reluctantly, but then within a coupld of days I went jaundiced. My eyes were yellow, my urine was dark brown, and my stool was pale grey. I ended up in A&E, after a CT scan was told I likely had a gallstone. The next day I had an ercp to remove the stone, but there was no stone, They needed however to put a stent in the double blocked bile duck. The conslusion was that potentially the stone passed on it's own and we are dealing wih inflammation, or there is something more wrong - we did a scan a week further that confirmed something more was wrong - I then went on to have an MRI, PET, EUS with biopsy, and I was officially diagnosed yesterday. I have a three centimeter tumour in the posterior head of my pancreas which seems to be contacting the smv. The big challenge is this vascular contact - it's unclear from the scans how much of an issue it is. 

Tomorrow I go to see the surgeon and he is going to make a recommendation basked on feedback from the mdt, and all the scans - do we try to downgrade the tumour first with chemo, or do the Whipple procedure now then chemo.

Has anyone else faced something similar? What are your thoughts? I'm nervous that the chemo may not work, and may make me too weak to have the surgery... I just feel I'd prefer to get the surgery over and down with... although some say that having chemo gives better results - ahhh so much info to take in. I'd appreciate any comments, thoughts, or just a hello - you are not alone!

Thanks,

Lx

 

Hi Lori

 

My 'story' is here;

 

https://forum.pancreaticcancer.org.uk/topic/1971-advice-pointers-on-what-else-i-could-maybe-do/?tab=comments#comment-28092

 

Since writing the above, my ultrasound came back clear, I'm still not jaundiced

 

But I noticed your comment in another chat this morning re the colour of your stools, and wondered if there was anything about the progression of things that mirrored my own. My stools have floated for a very long time - at least I think they have anyway. They've always been a brown colour - varying from dark to light brown. But in your comment about 'beach sand' kind of colour it got me thinking - and i think mine have gone a bit that way too. The thing that's happened too is that the 'smell' has resembled a fried egg from time to time. It's like a Hydrogen Sulfide (I googled it, cos it smells like rotting seaweed - sorry for putting anyone off their elevenses!). It's not every time but it is enough to go, "oh no" after you've been to the loo :-(

 

The pains I have had have predominantly been on the right side, under the ribs, sometimes in the same area on the left side too. Occasionally sharp, more often just annoyingly 'there'! Also, in my back recently - kinda just above the middle. Like my spine is sore. And also like a shooting pain in my shoulders which comes from time to time - mainly the right, sometimes both at the same time, and occasionally the left. Weirdly it's like it's on the outside of my scapula though, towards where it nearly meets the arm. It's so weird. In short, I think I've got a full set!

 

I've finally been referred to gastro (after jumping through all the hoops they'd have expected), but have also booked a private one-off consultation with a consultant on the recommendation of one of the PCUK nurses I spoke to on the phone (Jeni, who was wonderful). I don't know when my referral from gastro will come through, or what other tests the consultant may want to do (which I'm wary may cause my NHS referral to be cancelled and then I'm even more in shtook!). Anyway, just wanted to say I'm pleased that whilst you have your diagnosis, there is something they feel they can offer you. I wish you all the best.

 

IrnBru

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3 hours ago, irnbru1980 said:

 

Hi Lori

 

My 'story' is here;

 

https://forum.pancreaticcancer.org.uk/topic/1971-advice-pointers-on-what-else-i-could-maybe-do/?tab=comments#comment-28092

 

Since writing the above, my ultrasound came back clear, I'm still not jaundiced

 

But I noticed your comment in another chat this morning re the colour of your stools, and wondered if there was anything about the progression of things that mirrored my own. My stools have floated for a very long time - at least I think they have anyway. They've always been a brown colour - varying from dark to light brown. But in your comment about 'beach sand' kind of colour it got me thinking - and i think mine have gone a bit that way too. The thing that's happened too is that the 'smell' has resembled a fried egg from time to time. It's like a Hydrogen Sulfide (I googled it, cos it smells like rotting seaweed - sorry for putting anyone off their elevenses!). It's not every time but it is enough to go, "oh no" after you've been to the loo :-(

 

The pains I have had have predominantly been on the right side, under the ribs, sometimes in the same area on the left side too. Occasionally sharp, more often just annoyingly 'there'! Also, in my back recently - kinda just above the middle. Like my spine is sore. And also like a shooting pain in my shoulders which comes from time to time - mainly the right, sometimes both at the same time, and occasionally the left. Weirdly it's like it's on the outside of my scapula though, towards where it nearly meets the arm. It's so weird. In short, I think I've got a full set!

 

I've finally been referred to gastro (after jumping through all the hoops they'd have expected), but have also booked a private one-off consultation with a consultant on the recommendation of one of the PCUK nurses I spoke to on the phone (Jeni, who was wonderful). I don't know when my referral from gastro will come through, or what other tests the consultant may want to do (which I'm wary may cause my NHS referral to be cancelled and then I'm even more in shtook!). Anyway, just wanted to say I'm pleased that whilst you have your diagnosis, there is something they feel they can offer you. I wish you all the best.

 

IrnBru

 

Hi IrnBru,

 

I should share that the endoscopy I did was all clear, and the ultrasound I did the following week was all clear... even the first CT scan when I was jaundiced in A&E, the Dr missed the pancreatic lesion, he later went back to look and said, 'oh yeah, there is a small lesion on the pancreas'.

 

It was not picked up until the Dr ordered a CT with pancreas protocol. I know we moved fast, but we lost some time fluffy around assuming because I was so young, 48, it's likely just IBS.

 

Please push to get to the bottom of what's going on... you are even younger so they may want to make similiar assumptions.

 

All the best,

 

Lori

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