A neuroendocrine tumor may grow slowly or aggressively and spread to other parts of the body.Many people do not develop symptoms and the tumor is detected incidentally. When symptoms occur, they can vary based on the location of the tumor. In rare cases, skin flushing or fluctuating blood sugar levels may occur.Treatment depends on the type of tumor. Some approaches may include surgery, radiation, and chemotherapy.

Neuroendocrine Cancer

Neuroendocrine Cancer can often be a difficult to diagnose condition. However, what is less well known is the impact it has on those who are diagnosed.  I’m one of the lucky ones, even though I still ended up with distant metastases and it feels odd to say that having distant metastasis is lucky!

I consider my diagnosis to have been incidental as they were not investigating cancer and I suspect that is the route for many cancer patients. I also think I was lucky because I had instant access to specialists and got quick treatment, and my follow up and support by a specialist centre is in place. I cope, but I wouldn’t say it’s easy living with and beyond cancer.  As an advocate for a large online community, I do see many people struggle to get the same experience I had.  I’m in no doubt that more must be done to help with earlier diagnosis, access to specialists and access to the right therapies at the right time.  People must then be followed up with robust and expert led surveillance and support regimes, and for the long term. This must become the normal experience and this must become the minimum standard of care. 

This cancer is unlike others where the primary tumours are only located in a single organ. With Neuroendocrine disease, the primary tumour(s) can be found in many different organs and many different parts of the body.  The aggressiveness of these tumours can range from indolent right up to very aggressive types

This cancer is unlike others where the primary tumours are only located in a single organ. With Neuroendocrine disease, the primary tumour(s) can be found in many different organs and many different parts of the body.  The aggressiveness of these tumours can range from indolent right up to very aggressive types.  In aggressive types of cancer, stage is normally a key differentiator in prognostic terms, but with the less aggressive types of Neuroendocrine Cancers, often the grade can be more significant than the stage. There are a significant number of patients who have the lower grades but the highest stage and this this is one of the huge challenges for physicians and for patients to reconcile.  An individual’s experiences will rely on their stage, grade, age, general physical condition and type of Neuroendocrine Neoplasm (a term encompassing well differentiated Neuroendocrine Tumours and poorly differenced Neuroendocrine Carcinomas). Statistics indicate that early stage diagnoses are on the increase, this is great news.  But let’s be under no illusions, many people continue to be diagnosed late, often because of the relatively silent nature of the disease and often because of misdiagnosis and delay.  More needs to be done to address both of these 2 issues.

Neuroendocrine Cancer survival rates for pancreatic – 5 year

SEER Stage5-year Relative Survival Rate
Localized93%
Regional77%
Distant25%
All SEER stages combined54%

Neuroendocrine Tumor Survival Rate

The neuroendocrine tumor survival rate can vary significantly from patient to patient based on the location, type and stage of the cancer. Therefore, any general statistics relating to prognosis must be viewed within a proper context and are best understood with the help of a treating physician.

Is neuroendocrine cancer aggressive?

In many cases, neuroendocrine tumors are very small and slow growing. Studies show that these types of tumors can potentially last a lifetime without causing symptoms or spreading. As a result, the survival rate – especially for neuroendocrine tumors that are diagnosed in early stages and properly treated – can be favorable.

Things to consider about neuroendocrine tumor survival rates

While the overall neuroendocrine tumor survival rate can provide a helpful benchmark for physicians, it is of limited value to individual patients for several reasons. Consider that:

  • The data is based on the collective experiences of thousands of people, and the actual outcome for a specific individual can be markedly different from the general average.
  • It is impossible to predict the prognosis of any patient with a neuroendocrine tumor because every person responds differently to treatment.
  • Survival statistics are captured in five-year intervals; therefore, they do not account for the most recent medical advances or breakthroughs in treatment approaches.

At Moffitt Cancer Center, each patient with a neuroendocrine tumor is evaluated thoroughly by a multispecialty team of experts who have the expertise necessary to design tailored treatment plans for every type of neuroendocrine cancer. Additionally, we have a surgical team that specializes exclusively in neuroendocrine tumor surgery and performs complex procedures with an unparalleled level of skill and precision.

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