Supporting the

Neuroendocrine Cancer Community

Organ Donation / Transplantation Week September 18th – 24th 2023

Sep 21, 2023

Organ Donation and Transplantation Week aims to raise awareness about the ongoing need for organ donors and shares information about donation and transplantation. As this year’s Organ Donation Week comes to a close, we offer our support in continuing the conversation this annual campaign aims to promote.

The NHS Blood & Transplant Organisation has a wealth of resources available to view on their website – here we share a few links:

Who can donate? There are very few conditions where organ donation is ruled out completely.

Please note, that anyone with current active cancer cannot become an organ donor. However, it may be possible for people with certain types of cancers to donate after three years of treatment. It may also be possible to donate corneas and some tissue in these circumstances. You can use the link provided for further details: who can donate – we recommend you read the whole page.

  • If you are eligible to become a donor – and choose to do so, information that may help is available here.
  • If you are a registered donor and have since been diagnosed with Neuroendocrine, or any other form of, cancer – you may need to withdraw your registration: information on how to do this is here.

 

Transplantation and Neuroendocrine Cancer

For a small number of the Neuroendocrine Cancer community, liver transplantation may offer a new opportunity for treatment. However, eligibility criteria (whether this would be suitable for you or not) are necessarily strict – to both protect the possible recipient and respect the potentially life-changing gift from the donor, and their family. 

The criteria are evidence-based and have been agreed upon by neuroendocrine cancer and liver transplant experts, with the NHS Blood and Transplant organisation.

The aim of the UK & Ireland Liver Transplantation (in Neuroendocrine Tumours) Programme – is to determine the feasibility and usefulness of liver transplantation – in a select group of NET patients.

It is also hoped that it will spur greater research into the understanding and treatment of Neuroendocrine Tumours, resulting in better outcomes for all Neuroendocrine Cancer patients.

Earlier this year, Neuroendocrine Cancer UK CEO, Cathy travelled to the Queen Elizabeth Hospital, Birmingham to speak to Dr Tahir Shah about his work in developing this new service to improve outcomes, and quality of life, through surgery and/or liver transplantation.

You can listen to their discussion by following the link provided to podcasts: Episode 19.

What is liver transplantation? 

  • Liver transplantation is an operation to remove a damaged or diseased liver and replace it with a healthy one. The medical name for the procedure is orthotopic liver transplant (OLT). 
  • Most livers used in liver transplantation come from people who have just died, called deceased donors. In certain circumstances, a healthy living person may be able to donate part of his or her liver: this type of donor is called a living donor.
  • In the UK, almost 1,000 liver transplants are performed yearly – more than 80% use livers from deceased donors.
  • Adult recipients typically receive the entire liver from a deceased donor. 
  • Liver transplantation is a major operation, the assessment and selection phase, the ‘waiting list’ period, and the recovery process afterwards can each take time to complete. It is not without risk and there are several factors that need to be considered before transplantation can even be discussed.

Some of you may have seen the Channel 5 programme Surgeons: A Matter of Life or Death, Episode 2, broadcast on 27th July this year: which featured a gentleman undergoing a liver transplant procedure (though it was for a different reason than NET – the programme outlined what the procedure involves)

  • People who have a liver transplant will need to take medicines for the rest of their life to prevent their immune system from reacting to and possibly rejecting their new liver. They will also need to have regular appointments with their transplant and specialist care teams to check that the new liver is working well and to monitor overall health.

In the UK, survival following liver transplantation is over 90% at 1 year and more than 80% at 5 years While liver transplantation can offer a potential cure – certain diseases, including cancer, may return. It is, therefore, important that part of the follow-up care includes surveillance so that early detection and intervention, such as further treatment, can be discussed, planned, and given, as needed. 

Read Chrissie’s story here.

Vital to decision-making in considering any healthcare option for treatment, is ensuring you have the information you need, to help you make an informed choice.

Good quality patient information is fundamental to effective, patient-centered, quality care.

“Co-production involves people who use healthcare services, carers and communities in equal partnership; engaging groups of people at the earliest stages of service design, development and evaluation. It acknowledges that people with ‘lived experience’ of a particular condition are often best placed to advise on what support and services will make a positive difference to their lives.”NHSE

Neuroendocrine Cancer UK, in partnership with Dr Shah and his team at Birmingham, and members of our community, worked collaboratively to develop and produce an information resource for those with NET, who may be under consideration for liver transplantation

Our co-produced, downloadable PDF, can be found here.

The Neuroendocrine Cancer UK Charity has been a great partner in increasing access to advanced therapies, including liver transplantation, for NET patients.

We wish to thank you and all involved in generating this highly informative and comprehensive document, and would like it adopted by all the “NET” and liver transplant centres across the  UK & Ireland …This should be standard information for all centres to use …  

Dr Shah, Consultant Transplant Hepatologist and Clinical Lead, Birmingham Neuroendocrine Cancer Centre

For further information about organ donation and transplantation – visit The British Transplant Society and the Organ Donation & Transplantation website.

For information on Neuroendocrine Cancer click here.