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Primary pancreatic lymphoma


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So the story continues! Some of you may have seen my previous posts regarding my Mum who was diagnosed with locally advanced inoperable PC on 21/12/2021. From about Christmas day her jaundice completely disappeared and she started to feel well again, after being essentially bed bound days before. Also her AST and ALT blood tests have greatly reduced and whilst still above normal had dramatically reduced. She had her ERCP with stent yesterday which all went well. The consultant who performed the procedure commented that my Mum's case just isn't adding up. The CT scan shows what he described as a 'very large aggressive looking tumor' measuring 10cm, however my Mum is well and he feels the scan doesn't match up with how my Mum is presenting clinically. He says there is a 'reasonable chance' this is actually a primary pancreatic lymphoma rather than a pancreatic adenocarcinoma. He says they are very rare, so we've not to get our hopes up, but he has his suspicions. They have taken some cell scrapings whilst doing the ERCP and we've to wait 7-10 days for the histology report. I've tried to do my own research on primary pancreatic lymphoma but it's so rare I can't find much. Does anyone have first had experience of this? I'm lead to believe it's more treatable with a better prognosis? Any insight would be greatly appreciated :) xx

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I don’t have any information about a primary pancreatic lymphoma. However, I was diagnosed with another rare pancreatic cancer, a pancreatoblastima, which is primarily found in children not adults. The diagnosis couldn’t be determined through a biopsy. The only symptom I was having was attacks of pancreatitis. I was fortunate to be able to receive Whipple surgery and the diagnosis could then be made. Two months after the Whipple, a small tumour was found on my liver. 

I have learned that with a rare cancer, there is more of a probability for a genetic mutation. A sample of my tumour was sent for Next Generation Sequencing (NGS) and I matched for targeted drug therapy which appears to be working at the moment as my pancreablastoma hasn’t spread further. 


I’m very grateful for NGS and I would highly recommend it. It is the future of oncology. 

Best wishes to you and your Mum. 


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Thank you 😊 I have looked in to NGS before and definitely agree it's the future! I'll be sure to mention it to my Mum's team should she be diagnosed with a PPL. Best of luck with your treatment and I hope it continues to work for you! xx

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  • 1 month later...

I just wanted to update this thread for anyone who may be looking for answers in the future. I've gained so much from reading others stories so thought I would share my Mum's. My Mum went for her EUS biopsy a couple of weeks ago, whilst awaiting the results she started to derteriotae quite rapidly. After lots of back and forth as to why, it was discovered that the tumour had compressed her duodeum closed and she developed an obstruction. She had an NG tube fitted to drain 800ml of gastric juices which had been building up and making her violently sick horrible green acid. The next day she got the tube changed to a NJ (nasojeuojenal) tube with gastric outlet. So the NJ tube extends past the blockage so she can receive food through this, and the gastric tube is

used to aspirate her stomach contents off as they accumulate. This has been very distressing for everyone and after 6 days of no food my Mum has become extremely weak. Nutrition has now been started and we're hoping she picks up soon. Yesterday, when everything was looking very grim, we recieved the results from the EUS which confirms my Mum in fact has a pancreatic lymphoma, not a true pancreatic tumour. We couldn't believe it as we were told this is very rare. My Mum still has a long road ahead, and building her nutrition back up via the NJ tube is vital for her to be able to start treatment. However, as we are now dealing with a lymphoma we have been told she has a much more hopeful prognosis than previously thought. I can't thank everyone enough for the support they have given me over the past couple of months. My thoughts are with all those still battling this awful disease and I wish everyone the best on their journies https://twemoji.maxcdn.com/2/72x72/2764.png xx

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