neuroendocrine tumour - glucagonoma

Hello - Is there anyone out there who has had the same as me? I am 37 and trying to find anyone who has had a whipple operation like me and if so diagnosed with NET - glucagonoma? thanks very much...

  • You have posted in the Pancreatic section, so do I assume your glucagonoma was entirely in the pancreas. If you had the operation, then presumably they thought it hadn't spread and could all be removed. So, was that successful?

    A reasonable number of people here have had the Whipples operation, me included. But almost none I suspect for your reason. However, there are issues about post-Whipples which apply to all.

  • Thanks for that. Yes my glucagonoma was entirely in the pancreas, and they did manage to get it all out. I'm aware of just how rare my tumour was which is why I thought I would join this just in case . I am also having quite a few post op issues re digestion and pain, and am trying to ascertain what is deemed "normal", and on average how long it takes to recover and get back to work. I had my op in August. I do not know how long ago you had your operation (was yours successful?). Would you say your overall digestion is stable now? I am finding this all rather debilitating and unpredictable which is having an impact on me getting out and trying to build up my strength again.

  • Hi Catherine

    I don't have pancreatic cancer but I do know the wife of someone who had glucoganoma  in 2002 and is now in remission after spread to liver soon after distal surgery and has returned to work. He decided to retire when first diagnosed but has recently started working again - that doesn't mean it takes 9 years to recover!! because he had distal surgery the recovery will be slightly different. the following was written by his wife which you may find of interest:

    In January 2002 John, then aged 46, had a routine but thorough medical check up. He was feeling stressed but otherwise well and had no specific health worries. An abdominal ultrasound included in the check up package showed a shadow on his pancreas. An MRI a few days later confirmed the presence of a tumour and on 1st February 2002 John had a distal pancreatectomy and splenectomy. The tumour was successfully removed with clear margins, but the cancer had spread to three local lymph nodes. The initial pathology report confirmed it was adenocarcinoma and John prepared to face chemotherapy and radiotherapy.

    However, three weeks later we learned that a meticulous pathologist had carried out some extra tests on the tumour and had now concluded that it was not adenocarcinoma but rather the rarer islet cell or neuroendocrine type of pancreatic cancer, and specifically a low functioning glucagonoma. At this time we were living as expats in Hong Kong, and there were no doctors there who specialised in this rare form of cancer. We found a specialist in London (Dr Martyn Caplin) and had a long telephone conversation with him. He suggested that we wait until May and then come to London for baseline scans and a consultation, but he was hopeful that John would need nothing more than monitoring for years to come.

    Unfortunately the supposedly baseline scans showed that John's cancer had spread: there were several tumours in his liver and another in a para aortic lymph node. Further surgery was out of the question, so we discussed the other options. John has always had a very strong immune system so he chose to try immunotherapy using interferon first, even though the statistics show that this only works in 10-15% of cases. If it does work it can be continued for years and it has relatively mild side effects. Also John had never had any symptoms from his cancer so we reasoned that all we needed was for it to be prevented from growing or spreading.

    John started treatment with once weekly, self administered injections of peg interferon plus monthly injections of sandostatin (which seems to increase the effectiveness of interferon) in July 2002. Initially he had a strong reaction to the interferon - high fever, tremors, joint pains and nausea for 12-24 hours after the injection - but these lessened over the next few weeks and he now only has mild after effects which he controls with paracetamol. The monthly injections are uncomfortable and have to be administered by a nurse. John has some digestive problems which may be caused by the sandostatin, or may result from his surgery. He controls these with enzymes and IBS tablets.

    Regular MRI scans showed impressive tumour shrinkage and then stabilisation at a very low level in John's liver. A subsequent octreotide scan in October 2003 showed that John is effectively cancer free at present; the tiny lesions still visible on the last MRI do not appear to be active. He will continue this treatment with regular monitoring for the forseeable future.

    By choice, John has changed his lifestyle. He has given up his high stress job and we have moved back to the UK where he is now taking time out to travel and do other things that he never had time for due to the frenetic pace of his work. He is looking and feeling well, enjoying life and looking forward to the future.

    Update 29th January 2006

    John’s three monthly scans plus annual octreoscan have continued to show that he remains completely free of cancer. His scans have now been reduced to 6 monthly. One hiccup occurred in the summer of 2005 when John suffered a mini-stroke. He recovered quickly and completely from this and a battery of tests indicated that there is no significant likelihood of any further strokes, and no heart problems which could have lead to the stroke. John was advised to stop taking the interferon at this time. He resumed taking it a month later and his subsequent scan showed that this had not led to any recurrence of his cancer. John now rarely has any noticeable side effects from the interferon, and the digestive problems have also lessened considerably so that he no longer takes enzymes or IBS tablets.

    John is fit and well and living life to the full.

    Update February 2007

    John has now passed the 5 year mark.

    Update August 2008

    John came off all treatment for his cancer in November 07 and subsequent scans show him to be continuing in complete remission.

    2011 - John has decided to return to work

  • Thanks very much for that, very interesting. I read your story which I found very moving as well as being very inspiring. It just reinforces how important it is to make the most of things. This nightmare experience the last few months has certainly changed my view on what is really important.
  • There is one particular feature in the long report from 'sb66'. Most pancreatic cancers are in the head of the pancreas, and Whipples operation removes that. But the neuroendocrine tumours can be in the tail, which means removing the tail and taking out the spleen which is adjacent. If you had the Whipples operation, then maybe your glucagonoma was in the head of the pancreas.

    Recovery from Whipples takes several months. The pre-op advice I was given was that it might be possible to go back to work by 3 months. (As it happens I had recently retired, but retired people can be busy too.) Anyway, for me I didn't get out for my first serious activity until 3 months, I reached a stable state by about 6 months, but I could never have gone back to my previous job even though it was mainly office based.

    Taking out large bits of pancreas risks reduction in digestive enzymes, and reduction in insulin secretion. The latter more if the tail is taken out. If you are having problems with digestion you could ask to talk to the dietician attached to your specialist team. You may need Creon which is digestive enzyme replacement therapy.

  • Yes as Mark points out both neuroendocrine and common pancreatic cancer tumours can be in the head, body or tail of the pancreas. In the case I reported it was in the tail of the pancreas so "distal" surgery removing the tail of the pancreas and the spleen was peformed as opposed to the Whipples surgery that you had. Recovery and life after surgery is slightly different for both types of surgery - in the case of distals with the spleen removed there is greater risk from infection but digestive issues can be easier.

    People certainly do return to work and very hectic life-styles after surgery. Without trying I can think of at least 4. One seems to commute between UK and Switzerland, one was doing project management work travelling around the UK and up to Scotland. One is working in New Zealand and got caught up in the earthquake - she I think changed jobs as she was concerned about lifting things but she is still going strong 8 years later. One with non-functioning neuroendocrine was only 32 when diagnosed 9 years ago and so only just getting into his IT based career but went on to get married and have 2 children and has been working most of that time.