How is Neuroendocrine Cancer Treated?
For all patients, there are many things to consider in planning treatments. Your treatment will be personalised to you and the type of neuroendocrine cancer you have. Even if you have a diagnosis that sounds the same as another patient, your treatment and follow up plan may be different.
The key aim of treatment should be to help you have the best possible care and quality of life, by ensuring access to appropriate treatment, management of symptoms and addressing what’s most important to you.
One or more of the approaches below may be suggested:
- Removal of all or part of your NEN
- Control of your disease, by slowing or stopping the growth
- Palliation, or easing of your symptoms.
Treatment options will depend on the type, position and size of your tumour, and whether (or to where) it has spread. It will also depend on whether you have any other health concerns and / or illnesses and your general health and fitness. A big part of meeting with your doctors or specialist nurse/team, is to make sure you get the information you need to understand your condition. It is important to note that not all treatments are suitable for all types of Neuroendocrine Cancer and at the time of publishing, there are certain limitations related to licensing as well as usage restrictions which are noted alongside each treatment type.
Treatment Decision Making and Preparation
Here you’ll discover insights into navigating the complexities of treatment choices for neuroendocrine cancer. Delve into the pivotal role of the Multi-Disciplinary Team (MDT) and how their collaborative approach influences treatment decisions. Explore the key factors that shape these decisions, along with the questions the team may deliberate during their review of your results. Gain a deeper understanding of the post-MDT meeting process and find answers to frequently asked questions about treatment decision-making. Additionally, explore the intersection of genetics, genomics, precision medicine, and personalised care in neuroendocrine cancer treatment.
Select the image to learn more
Treatment Decision Making & Preparation
Explore the intricacies of treatment decision-making and preparation, guiding you through the essential steps in navigating your neuroendocrine cancer pathway.
Multidisciplinary Team Decision Making
Explore the treatment decision-making process, guided by the MultiDisciplinary Team (MDT), as they weigh various factors and discuss pertinent questions to devise tailored treatment strategies for neuroendocrine cancer patients. Delve into the key influences shaping MDT treatment decisions and learn about the ensuing steps following an MDT meeting, ensuring comprehensive care and support throughout your treatment pathway.
FAQs – Treatment Decision-Making
Find answers to commonly asked questions regarding treatment decision-making, empowering you with valuable insights and information to navigate your neuroendocrine cancer pathway with confidence.
Genetics, Genomics, Precision Medicine and Personalised Care
Discover the latest advancements in genetics, genomics, precision medicine, and personalised care, alongside frequently asked questions tailored to genetics and genomics, providing comprehensive guidance and support for your individualized treatment approach.
Types of Treatments
Learn about the aims of surgery, the different types of surgery and possible side effects.
- Keyhole surgery
- Laparoscopic
- Open Surgery
- Robotic
- Combined or Staged Surgery
- Open and Close Surgery.
This downloadable PDF is for those with neuroendocrine tumour liver metastases, who are being considered for liver transplantation.
Learn about the essential, clinically-guided eligibility criteria, and the process to potential consideration.
Learn about radiation based therapies such as;
- External Beam Radiation Therapy
- Internal Radiation Therapies
- Radioligand Therapy (PRRT)
As well as potential complications and side effects.
Select play to watch Dr. Amy Eccles talk about the spectrum of treatments for Neuroendocrine Cancer and advances & options in Radioligland Therapy. This video was recorded during the Neuroendocrine Cancer UK Virtual Summit 2020.
Learn about Chemotherapy and targeted molecular therapies such as;
- Everolimus (Afinitor)
- Sunitinib (Sutent)
As well as potential complications and side effects.
Learn about radiation based interventional radiology and its potential complications and side effects.
- Hepatic Artery Embolisation
- Portal Vein Embolisation
- PTC & Stent Insertion
- Stent Insertion
Learn about Endoscopic Therapies, Polyps, potential complications and side effects.
Preparing for treatment and giving consent… or not
Before you have any treatment, your doctor will explain its aims. They will usually ask you to sign a form saying that you give permission (consent) for the hospital staff to give you the treatment. No medical treatment can be given without your consent.
In this guide we will discuss the different types of consent, and also offer support on how to prepare for any upcoming treatment – physically and mentally and practically. You might need to organise some practical issues such as work, benefits, childcare and pet care.
No Treatment
No treatment?!
Not everyone with Neuroendocrine Cancer will need to be on treatment, and though that may seem strange – it may also be a relief.
Surveillance can be used to check your cancer and general health for any signs of change that may mean that a treatment might need to be considered.
In this guide we will explain why you may not be offered treatment for your Neuroendocrine Cancer.
You can also find information about Supportive care, Symptom control and ‘Palliation’.
Complementary & Alternative Medicines
Complementary therapies in cancer are considered as those “which are used alongside conventional cancer treatments”.
In this guide you can learn about the different types of complementary therapies, the benefits and information about how to choose the right practitioner.
UK trials and overseas treatments
- Q. How do I find out about UK and overseas trials?
- Q. I’m thinking about applying to access a trial or treatment in another country. Have you any advice?
- Q. Can Neuroendocrine Cancer UK help with fundraising to get to the trial/treatment or share a fundraising campaign through the website / social media?
- Q. There’s a treatment that we’ve heard about, but we haven’t seen mentioned on the Neuroendocrine Cancer UK website (or related platforms) - is there a reason for this?
The information we provide about clinical trials is sourced from various trial databases, both national and global. You can search for registered trials based on drug treatments or condition names.
Clinical trials information resources:
- Ancora App: Ancora.ai helps you discover personalised trial options. It’s relatively easy, fast, and free to use.
- BePartofResearch: This resource allows you to learn about health and social care research taking place in England, Northern Ireland, Scotland, and Wales.
- ClinicalTrials.gov: This platform offers insights into clinical studies from around the world.
- RareCan: RareCan aims to connect you with information and tools to help manage your life with cancer. It also serves as a resource for researchers striving to enhance the diagnosis and treatment of rare cancers.
- UKINETs: A list of ongoing UK trials in Neuroendocrine Cancer.
Please note that these databases are independently managed by their respective hosts and are not affiliated with Neuroendocrine Cancer UK. Some may be more user-friendly than others. For more information on research, how to participate, and how to navigate these systems, consider visiting our research page.
A: There are several important factors to consider. We recommend that you:
1. Consult your specialist neuroendocrine cancer team:
- Are they familiar with potential trial/treatment options in your chosen country?
- Are there any available results from this trial/treatment, and if so, what are the anticipated outcomes for you?
- Do any health concerns pose risks for travelling for the trial/treatment
- According to their assessment, how close should you be located to the trial/treatment centre for follow-up, monitoring, and in case of complications
- How long should you stay?
- How would receiving treatment abroad impact your care and support from your current healthcare team?
- What are the next steps if the trial/treatment shows promise but isn’t funded in the UK?
2. Engage with the overseas centre about the above, plus:
- What are the eligibility criteria and referral process? How will they evaluate your suitability?
- What is the frequency and duration of required visits for the trial/treatment?
- What follow-up care is needed at the overseas centre, and how will communication occur with your home/UK team?
- What arrangements are available for accommodation during and after the trial/treatment?
- How much are the travel, accommodation, and subsistence costs? Will the trial sponsors or the overseas centre cover any of these expenses?
- What transpires when the trial concludes, or treatment is finished? How will information be shared with your home/UK team? What details will be shared, such as scans, treatment specifics, and results?
3. Discuss with your family/support network about:
- Logistics of travel and accommodation arrangements.
- Expenses not covered by the trial sponsor or treatment centre, including travel, food, accommodation, and insurance.
- Contingencies for unexpected delays or extended time away.
- Managing responsibilities at home, including caring for others and potential impact on work/study/income.
– Potential implications for benefits or financial support. - How you will practically, emotionally, and financially manage this commitment, possibly on an ongoing basis?
A: Unfortunately, we are unable to assist with personal fundraising campaigns or promote them for the following reasons:
As a registered UK charity, we face challenges with web-based fundraising methods, including crowdfunding, due to the following considerations:
1. Regrettably, these platforms can be susceptible to misuse. While most individuals are sincere and provide evidence of campaign outcomes, current web-based platforms lack requirements, regulations, and accountability for how donated funds are utilised.
2. Conducting the necessary verifications demands resources beyond our capacity. Moreover, we do not wish to determine the merit of one campaign over another.
3. This situation underscores an unmet need: regulatory bodies and pharmaceutical companies must establish mechanisms to ensure that trials and treatments reach all individuals for whom clinical evidence suggests that a trial or treatment could be beneficial and appropriate.
A: At Neuroendocrine Cancer UK, our goal is to provide essential information about clinical trials and new treatments in a transparent and timely manner.
We primarily share details about clinical trials and new therapies available in the UK. However, we also extend our coverage to include global studies that may eventually become trials or available treatments in the UK.
Nevertheless, there might be research studies conducted at single centres, often called ‘in-house’ research studies, that might not be registered on the validated databases we rely on.
Additionally, there could be treatments offered outside the UK that lack authorisation for use within the UK, either due to being unlicensed or having been refused a license.
And sadly, unlicensed clinics are operating globally that offer unproven or unlicensed therapies. The internet hosts sophisticated websites that appear professional and appealing but make unverified claims about ‘alternative’ treatments. It’s crucial to be vigilant about unapproved or unlicensed ‘clinics’ found worldwide, which often provide unverified treatments at significant costs.
Even if a treatment shows genuine promise, it’s imperative that the treatment pathway is safe:
- Through clinical trials testing: To establish potential benefits and avoid unnecessary harm (both short-term and long-term). Clinical trials are closely scrutinised and regulated to prioritise safety.
- Through licensing or official approval.
- Through accelerated access programs and/or compassionate use protocols.
- AND
- Through an institution or specialist centre equipped with the necessary resources, staff, knowledge, expertise, and experience to deliver the trial or treatment safely to you.
Using an ‘off-label’ or unproven/unlicensed treatment entails serious, potentially life-limiting, if not life-threatening, personal risks. Legal and insurance concerns also come into play.
It is paramount to consult with a specialist neuroendocrine cancer clinical team before contacting such clinics or considering international travel for treatment.