Why do I need to be assessed?
Total pancreatectomy and islet autotransplantation is clearly a major undertaking and is considered only as a “last resort” treatment when all else has failed to relieve your symptoms.
The surgery itself can take between 8-12 hours. If your consultant feels that you should be considered for this procedure, we will ask you to undergo a formal pancreatic assessment.
This involves a comprehensive work-up and treatment plan. As mentioned at the start of the booklet, being assessed for the procedure does not necessarily mean that you will be offered this surgery but it allows a multi-disciplinary (MDT) team of consultants and medical personnel to assess your suitability and at the same time makes sure that you fully understand what is involved.
Who will co-ordinate the pancreatic assessment?
The aim of the assessment and workup is to ensure that you fully understand the procedure and the long-term results.
Your assessment process is a streamlined service which will be co-ordinated by a pancreatic nurse specialist.
The role of the nurse specialist is to explain the assessment process and to provide you with as much information as possible to enable you to make an informed decision as to whether or not you wish go ahead with the surgery should it be offered to you.
As part of your assessment you will see Professor White who leads the program who will organise a number of special investigations.
This is all done in a consultation which may initially take up to 1 hour to complete.
The pancreatic nurse specialist or Professor White’s Secretary will be a permanent contact point for you throughout your assessment.
The nurse specialist will then arrange appointments for you with various consultants who are part of the assessment team. In addition you will be introduced to a patient who has had the procedure done.
On completion of the assessment the nurse specialist will arrange for you to see Professor White again in an outpatient clinic with some of your family, if you wish, to discuss the outcome of your assessment.
What tests will I have and why?
Pancreatic function tests
In order to test the function of the pancreas we need to do two important tests which are as follows:
- Mixed meal tolerance test (MMTT)
- Faecal elastase stool test
Mixed meal tolerance test
The pancreas produces insulin, which controls your blood sugar levels. It also secretes enzymes that help digest your food. In order to test your pancreas’ current ability to produce insulin and control your blood sugar we ask you to attend an organised clinic appointment where we would like you to drink a high carbohydrate drink.
This should stimulate your pancreas to produce insulin and by taking blood tests at regular intervals following the drink, we will be able to determine if you have developed or are at risk of developing diabetes.
Faecal elastase stool test
This stool test measures the amount of elastase 1 (a pancreas enzyme) in a stool sample. This test will tell us if your pancreas is producing enough digestive enzymes. You will be asked provide a stool sample and this will be sent off to the laboratory for testing.
Imaging
All your previous imaging will be re-evaluated and it is possible that more recent scans will be required in the form of a CT or MRI pancreas. It is also possible that an endoscopic ultrasound will also be required.
Anaesthetic assessment
You will also be reviewed in our pre-assessment clinic (clinic H). Here your fitness for surgery will be assessed and this may involve a cardiopulmonary exercise test on a stationary bicycle.
Who are the multi-disciplinary (MDT) team?
The MDT is a team of specialist medical personnel who are experienced in the management of patients with complex, long-term diseases of the pancreas.
They see all patients being considered for a pancreatectomy and islet autotransplant and decide which patients are most suitable and should have the operation.
This procedure is a major undertaking and can only be performed by surgeons with experience of complicated pancreatic surgery.
The surgeons also work with a team of doctors with experience in isolating and transplanting islet cells back into the liver and also specialist doctors who look after the control of blood sugar in these complicated patients.
As with any major operation there are risks and complications do occur and very occasionally these can be fatal.
Although the risk of the complications (particularly the major ones) is small and it is essential that you are assessed and consented appropriately understanding the risks involved. The MDT consists of the following consultants:
- Pancreatic surgeons
- Diabetologist
- Gastroenterologists
- Clinical psychologists
- Pain specialist (anaesthetist)
- Clinical nurse specialist
- Clinical nurse specialist
The role of the members of the MDT is to assess the appropriateness of the proposed surgery together with the your suitability, and to discuss the procedure in detail.
They will examine you and complete a comprehensive clinical assessment of your condition. Each consultant will focus on their particular specialist area and ask you important questions related to your chronic pancreatitis to assess how you manage your condition and what effect it has on your quality of life.
It is important that you give a clear history to each consultant on how your pancreatitis impacts on your life and what you do to manage it. Each consultant will then complete an individual report on your suitability to be put forward for the surgery. You will be informed of their decision at the end of your consultation if you ask them.
It is important to know that any member of the MDT team is able to say if the procedure should not go ahead if they have concerns about your diagnosis, appropriateness of the surgical procedure or your suitability for a combined islet autotransplantation. If they do then this decision will be explained to you and discussed further when you meet Professor White.
Why do I need to see other patients who have also had pancreatic surgery?
As part of the assessment process you will also be introduced to a patient who has previously undergone the procedure.
It is important to discuss with a patient who has gone through the same assessment process and can give you an accurate insight as to what to expect, how they prepared themselves for the procedure and give you advice you may find useful.
They will make you understand that your recovery will be a long process and generally can take a good two years before you truly feel the full benefit of what you have been through.
Also maintaining a positive attitude with help and support from your family and friends is a vital part of the recovery process and is easier if you know what to expect at each stage.