could a NET look like a cyst?

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This topic contains 9 replies, has 4 voices, and was last updated by  Tricia 3 days, 21 hours ago.

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  • #53684

    beans
    Participant

    I have a tiny cyst on pancreas tail – could this be a NET? I am still undiagnosed. Suffered for 20 years with painless diarrhea after first food/meal of the day and never at night, severe acid reflux and flushing following food, then 6 years ago and continuing, pain on upper left quadrant spreading to back when laid down, during the night, no real pain at other times of the day. I have had no treatment only pain relief (Tramadol) at night.

    I have family history of carcinoid tumours, Grandmother died of oesophagus cancer, her nephews x 3 all had gastric carcinoid tumours.

    could a small cyst be mistaken for a carcinoid tumour? Thank you – any replies will be truly appreciated

    #53696

    jennyl
    Participant

    Hi Beans

    A warm welcome to the forum. It’s very difficult for us to say whether a cyst can be a carcinoid tumour as we’re only patients or carers of patients with Nets and not medically trained. I think most people on the forum would recommend being referred to a Net Centre and if you’re in the UK, there are quite a few around the country now, that is if you’re not already attending one of course. It’s my husband who has Nets in his small bowel with spread to his liver and he has carcinoid syndrome, so it will have different symptoms to pancreatic Nets.

    There well may be someone else with pancreatic Nets who will also post a reply shortly – I do know some are either in treatment or at the hospital for results so they’re not always here straight away. More information about any tests or scans you have had would also be helpful to know.

    Jenny

    #53703

    dabber
    Participant

    Hi Beans, a warm welcome to you, and yes, I have to agree with Jenny, have Neuroendocrine tumours been mentioned to you, are you being treated at a centre with a Net team? and how do you know it is a cyst? sorry lots of questions, but you do need to have a correct diagnosis first. Have you had blood tests, an ultrasound scan? I think you must look for a correct diagnosis first, then perhaps ask to be referred to a net centre, if that is what they think it is. I have a pancreatic net, and had surgery. My journey was first and foremost, a blood test, that came back, showing my liver under stress [or something like that – I was asked was I a heavy drinker = not I’m not!] I was sent then for an ultrasound, which picked up something, and was then fast tracked down the cancer route, and then a diagnosis, and a biopsy taken. Hope this helps, but you do need to be sure what the problem is, you mustn’t try and guess, and worry about the unknown, unless you are sure that you have a cyst? Perhaps our specialist nurse Nikie may be able to have a word with you. Hope the above helps, and I hope to speak to you again soon, Carole.

    #53711

    beans
    Participant

    Thank you Jenny & Carole, so kind of you to respond. It was a CT scan where the small cyst was found and I have a copy of a letter sent by the consultant to my GP. The CT scan was by then a year old and the consultant sent me for another CT scan, he spoke to me on the telephone with the results and said he could see calcification; my husband and I attended his clinic a couple of weeks later, which followed their weekly Thursday meeting, where the ‘team’ get together to discuss their case load. The clinic appointment was bizarre, he dismissed the calcification, said he had not mentioned this to me and that he would not need to see me again, it was all rather odd, perhaps I was not ill enough to receive treatment.

    So, a long winded way of saying yes, this small cyst was there and confirmed in a letter. I know that neuroendocrines can be very small, grow slowly and take many years to show symptoms.

    The pain grows in severity the longer I am laid down, when I get up and have walked around it disappears, typical pancreas problem symptom.

    The diarrhea comes between 30 minutes to 1 hour following my first food of the day, like a chemical reaction, I have had this for over 20 years, but since taking Tramadol I still go to the toilet ‘quickly’, but not always loose as the tramadol has an effect of making things firmer. I periodically have nights without tramadol to test how things are, they are just the same.

    I am aware that it takes many years to correctly diagnose neuroendocrine tumours and they start so small that they can not be seen, which is why I ask if they can look like cysts when they are small?

    Very best wishes, to all, Beans

    #53712

    dabber
    Participant

    Hello again Beans, well, not quite sure what to say! Perhaps you need to go back, and start at the beginning, it was an ultrasound that I had, that picked up the mass in my pancreas. Perhaps there is no need to worry, if your consultant thinks all is well, but you are doing, so for your own peace of mind you need to be re-assured. You are always able to have a second opinion, which you need to ask the hospital to refer you, or your GP can do this. Not sure where you live, but look at the map where the net centres are, there is a link on here but my method is – at the top of the page, click on Net clinics and research – click on UKINETS website – click on clinical practice this will take you to the map, and the details of the hospitals that have a net clinic. Have you ever been prescribed Omoperazole? I personally would not take Tramadol, but you have been prescribed this, so not for me to interfere. We are all unique, our symptoms are all so varied and different – I never had pain, not severe pain, although I was diagnosed as having costocondritis – excuse the spelling, a year or so before my diagnosis – I never had an upset tum – the first thing when alarm bells started to ring, was suddenly, feeling ‘just ill’ – couldn’t describe it but when a meal was put in front of me, I just coudn’t eat it – after seeing my GP, then things moved very fast, there was no waiting, first bloods, then ultrasound, then referral [ it was to our local hospital,] but they did specialise in pancreatic surgery, and I didn’t transfer for a year or so, to a net centre – but I would certainly recommend you go to a specialised upper GI team, they will do a biopsy if they think it is necessary, then you must make your decisions based on that. I do believe, like mny others, that I had had nets for some time before diagnosis, but it will be five years this August, since my operation, and I will always be grateful for the excellent care I have received since, and still do – my life is good, I love it! My knowledge had been learnt, through my journey with a Pnet, reading the correct information – there is a lot of mis-information out there, and listening to others. I keep a book – a complete record of my journey – it is very useful and I take this to every appointment I go to, works for me, hope this helps a little – I forgot to mention, I have to take Nutrizym 22 with all my food because I lost the body and tail of my pancreas, but many on here, who have nets. also need to take these enzymes to digest their food. Carole.

    • This reply was modified 3 months ago by  dabber.
    #53715

    jennyl
    Participant

    Hello Beans

    I have to agree with Carole. You will need to be guided by the GI team first and then after their decisions decide where you would like to go. As Carole has said, you can always ask for a second opinion.

    Hope you get sorted soon.

    Jenny

    #53721

    beans
    Participant

    Dear Jenny & Carole, thank you both from my heart for your kind responses. I have accepted the pain management for 3 years now, like you I have kept a journal of all that has happened, a kind of living dialogue. I have tried to get on with life as I got bogged down with so many tests, the specialist hospital I last went to was The Freeman in Newcastle upon Tyne, they are a HPB Centre.

    I have thought a lot about the delaying methods used by the NHS generally, my husband has been suffering for many months, been pushed around the system with no actual treatment, it has taken some tough talking, but he needs a very serious, big operation on his back/spine. It brought back how I was pushed around in the same way and in the end I back off and here I am still without any treatment, just pain relief.

    I have taken Lansoprazole for 10 years, prior to that Zantac, which was not really effective for extremely bad acid reflux. I mentioned my Grandmother who died from oesophagus cancer, she had suffered from a really young age from serious acid reflux. She never took any meds for this problem.

    I was called to a genetics clinic following the diagnoses of the 3 nephews of my Grandmother of carcinoids, all three have survived but there is clearly a family problem, their Mother, the sister of my Grandmother, had died of stomach cancer in 1978. The Clinic are looking into the whole family and those of us who suffer from gastric issues.

    I recall reading about cystic tumours and endocrine tumours of the pancreas; obviously with the length of time, the cyst I have has not grown to any large size, but it led me to think that perhaps it could have been mistaken for a NET.

    I have to concentrate on getting my husband through his surgery and many months of recovery and will continue to consider and monitor my own situation. I hope that somebody may read this and say I have heard a similar story or that happened to me. I think the nearest NET clinic is Manchester, there is a smaller unit in Leeds, neither are particularly near to me. It may be best to start again with my pain, yet this is daunting as it took 2 years to get anywhere last time, to have a top consultant deny what he said to me, quite exasperating and I gave up. Thank you again for your kind words of encouragement and advice. Take my kindest wishes for you and your families. Beans xx

    • This reply was modified 3 months ago by  beans. Reason: wrong drug named
    #54256

    Tricia
    Participant

    Dear Bean,

    So sorry you have not resolved your problem regarding cyst. To cut a long story short I had to go to my local hospital after bleeding, I has three ultra scans plus ct scan which showed a large mass/cyst on my overies the consultants did not know what it was and said they would need to operate, when I informed them I would need octrodite before and during an operation they did not know what it was so I informed them to get in touch with The Royal Free. The outcome was they sent the ct scan to The Royal Free and they compared this with a pet scan I had five and half years ago they confirmed to me it was a NET and I have had it all the time which was a shock. SO it goes to show unless you are under a NET specialist they do not know so please try and get referred to a NET centre. I have only just come back to the forum as I had a very complicated operation for the removal of my nets on the overies just over six weeks ago and I still have another procedure to go through relating to the operation. Hope all goes well for you and your husband Tricia

    #54503

    beans
    Participant

    Dear Tricia, I hope very much that you are recovering well from your surgery. Your story has interested me as I have a history of ovarian cysts. With all due respect to health professionals I do believe that a NET specialist is essential to truly recognising a NET. I took the advice of the kind people who have left messages here and started at the beginning again, with dismal results so far, my GP totally ignoring the written evidence of a cyst on pancreas tail from a CT scan some time ago, he has different ideas and believes my epigastric pain that spreads to my back when I lay down is a trapped nerve! This must be a clever nerve that responds to what I eat and drink. My next step is a private CT scan to establish if the cyst has grown and the condition of my pancreas.

    I have found through research on the NICE website that a NET can mimic a cyst, this information has spurred me on, at the very least I should have the cyst monitored.

    How did you know that you needed Octrodite, did you have a NET previously, where was it found?

    I do wish you well, please keep in touch and let me know how you are getting on. Karen

    #54590

    Tricia
    Participant

    Hi Karen. Sorry it has taken me a while to reply, I needed Octrodite before, during and after my operation as this stops me going into a carcinoid crisis. I still have Tumors on my liver and in my small bowel. I am recovering very slowly from my operation had another ultra scan on my kidneys and bladder at UCL hospital last week and go back on 10th July for the results. Next Saturday I am having a ct scan at the Royal Free and seeing consultant for results early June. THese were due in February but had to cancel as I was having my operation.

    I am still in a lot of pain, and get very tired, I think it is going to take me a long time to recover.

    Hope you get sorted and manage to see a Net specialist at a Net centre As I said before some doctors thought mine was a cyst but after it went to the lab after operation it was confirmed as a net.

    Regards Tricia

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