raised lymph nodes

hi everyone .newly diagnosed with pbc.had slightly high gt levels for years then all bloods suddenly slightly high except hemoglobin.an ultrasond and ct scan showed partially raised lymph nodes on pancreas.thought my time was up convinced i had pancreatic cancer but a debate with doncaster and sheffield docs decided i had pbc.at first i was relieved i hadnt got cancer now really down that i have

this.im 53 year old woman of normally fantastic health.has anyone else had pancreatic lymph nodes?cazz22

12 Replies

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  • Welcome to the site Cazz you are not alone. Re the panreatic lymph nodes have never been diagnosed with that but then again its my liver that has always been under scrutiny! I am assuming that whomever your dr is assumed your abnormal lfts (Liver function tests ) were down to a problem with your pancreas as opposed to your liver. I was diagnosed through a simple blood test called Antimitrocondrial Antibody (AMA for short and hope have spelt that right!) after suffering horrendous itch, very painful joints and fatigue for approx a year. If you click on members icons you can read many of our experiences in living with PBC. Fear not just remember two important things PBC is a SLOW progressive disease and many people live full and normal lives not even knowing they have it til much later in life if at all and you are more likely to die from something else and still WITH PBC than to die FROM PBC. Hope that helps.

  • Thanks littlemo.just got my pack of info but most of all its nice to talk with someone who understands.

  • Hi cazz22 sorry to here about your diagnosis. I have never had raised lymph nodes on my pancreas but I have had them in my neck. It sent my doctors into a spin talking about lymphoma etc but what actually happened was they swelled up and went down on their own before I got to my scan (oh what a familar story).

  • Hi cazz22 I'm also sorry about your diagnosis. I was diagnosed 4 years ago and one of the problems with my diagnosis was 'enlarged lymph nodes' behind my liver. After scans and biopsy the only conclusion they could come to was that I had liver growing outside my liver??? The medical profession have said that they have never come across this and I have had no answers to my many questions regarding this and PBC. I'm sorry this doesn't help you but try not to worry too much. We on this site are all behind one another.

    Take care

  • thanks everyone for answering.Had christmas from hell when my gp told me i more than likely had a tumor.Had ct scan early in new year where they were able to see i had no tumor but partially enlarged lymph nodes on pancreas.Even my specialist seemed at a loss and couldnt say if i had cancer or not.Apparently i was the cause of debate between several hospitals and a liver specialist from sheffield said it was common in pbc hence the reason i asked.At first i was so relieved to find out i didnt have pancreatic cancer(what a vile illness) but now feel like a pricked balloon with pbc diagnosis.Its really helped talking to you all.Thanks

  • Hi cazz i am also new to the site.I really felt for you when i read what you wrote.I to had a enlarged lymph node in the pancreas and thought it was cancer,i have never been so scared.I had an mri which showed the lymph node ,the consultant said that they see this in people with pbc,he wanted to give me a ct scan to see if i had any more diseases but i have said no for now,i am finding it hard to come to terms with this one.I think the reason the lymp node has enlarged is because it is right next to the liver.My pancreas appeard normal on the mri so it must be just part of pbc.I hope this helps .Take care

  • Thanks lainey.That sounds so like mine.I was petrified and i dont scare easily.I guess I was still worrying that it might be pancreatic cancer or like.Im so very sorry you have been through that and now like me have pbc.I too am struggling with this and I guess im in denial.I was offered urso but with no promises.At mo have no symptoms as such but posted up a question to ask other forum users if they recommend it.I guess the answer is a resounding yes.I intend to ask more questionsat my next consultantcy.Thanks for your answer tho you have helped me greatly.

  • So sorry cazz i havent replied,i am still feeling my way around the site.I hope you are ok,did you find any more info on the lymp node.Have you started on urso yet,it has really helped me,my lfts have really come down in the 7 months of taking it.I must admit my aches and pains have got worse,but i am not sure if that is the urso or not.Before i was told that i had pbc my periods were very iregular,i was also having hot sweats,i think they call this hives,the urso has even sorted that out as after the first month of taking it my periods became normal again,and have stayed that way.When i saw my new consultant he spoke very possitive about urso,he said that it practically brings pbc to a stand still,i trust what he says very much as he does alot of work with the liver trust and it was them who told me about him,so i know he has alot of experiance in pbc.I hope this has helped,take care of your self xx

  • sorry cazz i meant to mention that i also had high levels of gt,i wonder if there is a link between the gt and the lymp nodes,my lfts have improved but gt is still a little high.

  • hi lainey your symptoms sound so much like mine.Should have seen specialist this month but appointment now been moved to May as he has gone on hol.Most days feel pretty good except for foot and leg pains.I too had problems with periods so much so doc sent me a biopsy which showed everything was fine.Im still flitting from being angry that I have this thing to complete denial.At mo not on urso but its going to top of list to discuss when i see consultant in May.Take good care of yourself and il keep you posted on lymph nodes.

  • Have very enlarged lymph nodes on my pancreas. They found them 3 yrs ago when I was complaining of pain in my side and back. Spent the last 3 years with Drs searching for cancer somewhere. A yr ago a specialist diagnosed me with PBC after my alkaline phosphatase were high. Had liver biopsy and it said had stage 1 . She likes my lymph nodes are due to my liver and should go down. But lately more pain daily there on left side and back along with stabbing pain on right side..I'm not so convinced, see her tomorrow and going to ask

  • Hi Pollap-I haven't been on here for a while now but your message popped up on my e mails.None of my doctors are concerned about the nodules now.It seems that it is very common place but also a good sign as it is rare that people showing nodules progress onto liver transplants(or so my consultant says) From time to time I get an uncomfortable ache in liver area but pretty much I put Pbc out of my mind now hence why I haven't been on this site for a long time.3 years has been a long time for you to be under that stress.I do hope your specialist can put your mind at rest tomorrow.Best wishes

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