Testicular Neuroendocrine Tumours

Testicular neuroendocrine tumours (TNETs), also known as testicular carcinoid tumours, are a very rare form of cancer that develops in the testicles. The testicles (or testes) are two egg-shaped glands of the male reproductive system that sit outside of the body in a skin sac called the scrotum.

The testicles are responsible for the production and storage of sperm, the male gamete (reproductive cell) that swims to fertilise the female gamete, called ova or eggs.  They are also responsible for producing and secreting testosterone, the primary male hormone. Testosterone is responsible for the regulation of sexual development (including development of male reproductive organs, and secondary sex characteristics such as facial hair and voice deepening), bone and muscle mass, fat distribution, sex drive (or libido), sperm production and red blood cell production.

Neuroendocrine cancers are a complex group of tumours that develop in the neuroendocrine system, which is responsible for regulating important bodily functions such as heart rate, blood pressure and metabolism. They most commonly develop in the gastro-intestinal tract, pancreas, and the lungs; however, they can develop anywhere in the body. These tumours develop from neuroendocrine cells, which are responsible for receiving signals from the nervous system and producing hormones and peptides (small proteins) in response.

TNETs are often diagnosed in men between the ages of 30-40, however, they can affect anyone with testicles – including men, teenagers, transgender women, non-binary individuals, and intersex people – at any age.

Types of Testicular Neuroendocrine Tumours

There are three primary types of TNETs, which are classified by their location of origin and if they develop alongside another condition:

  • Primary TNET (cancer originates in the testicles).
  • Secondary TNET (cancer originated in another location and metastasised/spread to testicles).
  • TNET associated with teratoma (TNET developed after or alongside a teratoma, which is a type of germ-cell tumour often found in the gonads).

Treatment

If a testicular NET is detected, it will be staged and graded based on size, metastasis, and how the cancer cells look under the microscope. Staging and grading helps your doctors determine the best treatment for you.

Cancers can be staged using the TNM staging system:

  • T (tumour) indicates the size and depth of the tumour.
  • N (node) indicates whether the cancer has spread to nearby lymph nodes.
  • M (metastasis) indicates whether the cancer has spread to other parts of the body.

This system can also be used in combination with a numerical value, from stage 0-IV:

  • Stage 0: this stage describes cancer cells in the place of origin (or ‘in situ’) that have not spread to nearby tissue.
  • Stage I: cancer cells have begun to spread to nearby tissue. It is not deeply embedded into nearby tissue and had not spread to lymph nodes. This stage is also known as early-stage cancer.
  • Stage II: cancer cells have grown deeper into nearby tissue. Lymph nodes may or may not be affected. This is also known as localised cancer.
  • Stage III: the cancer has become larger and has grown deeper into nearby tissue. Lymph nodes are generally affected at this stage. This is also known as localised cancer.
  • Stage IV: the cancer has spread to other tissues and organs in the body. This is also known as advanced or metastatic cancer.

Cancers can also be graded based on the rate of growth and how likely they are to spread:

  • Grade I: cancer cells present as slightly abnormal and are usually slow growing. This is also known as a low-grade tumour.
  • Grade II: cancer cells present as abnormal and grow faster than grade-I tumours. This is also known as an intermediate-grade tumour.
  • Grade III: cancer cells present as very abnormal and grow quickly. This is also known as a high-grade tumour.

Once your tumour has been staged and graded, your doctor may recommend genetic testing, which analyses your tumour DNA and can help determine which treatment has the greatest chance of success. They will then discuss the most appropriate treatment option for you.

Treatment is dependent on several factors, including location, stage of disease and overall health.

Treatment options for testicular NETs may include:

  • Surgery, potentially including:
    • Unilateral orchidectomy/orchiectomy.
    • Bilateral orchidectomy/orchiectomy.
    • Lymphadenectomy.
    • Testicular prosthetic surgery.
  • Chemotherapy (limited).
  • Radiation therapy (limited).
  • Somatostatin analogues (SSAs).
  • Clinical trials.
  • Palliative care.

Testicular Neuroendocrine Tumour Treatment and Fertility

Treatment for TNETs may make it difficult to conceive a child. If fertility is important to you, discuss your options with your doctor and a fertility specialist prior to the commencement of treatment.

Risk factors

Because of how rare TNETs are, there has been little research done into the risk factors of this disease.

Symptoms

Some patients with TNETs will appear asymptomatic in the early stages of disease. As the tumour progresses, some of the following symptoms may appear:

  • Testicular mass and/or swelling.
  • Pain or discomfort in the testicle(s) and/or scrotum.
  • Fluid build-up in the scrotum.
  • Changes in testicular size and/or shape.
  • A feeling of heaviness in the scrotum.
  • A feeling of unevenness in the scrotum.
  • Enlargement and/or tenderness of breast tissue caused by excess hormones.
  • Cryptorchidism.
  • Carcinoid syndrome (rare), which carries its own set of symptoms:
    • Facial flushing (usually red or purple in the face, neck, and/or upper chest).
    • Diarrhoea.
    • Wheezing.
    • Abdominal pain.
    • Carcinoid heart disease (plaques on the heart muscle caused by excess hormone production).
    • Faecal urgency.
    • Fatigue.
    • Skin changes, such as red or purple spots on the face, neck, and/or upper chest.
  • Paraneoplastic syndromes (rare).
  • Hypercalcaemia (rare).

Not everyone with the symptoms above will have cancer, but see your general practitioner (GP) if you are concerned.

Diagnosis

If your doctor suspects you have a TNET, they may order the following tests to confirm the diagnosis and refer you to a specialist for treatment:

  • Physical examination.
  • Imaging tests, most commonly an ultrasound.
  • Blood tests.
  • Exploratory surgery.

Exploratory Surgery

After conducting the previously mentioned diagnostic tests, your doctor may strongly suspect that you have a testicular cancer. In most cases, a diagnosis can be confirmed after a biopsy, where a section of tissue is removed and analysed for cancer cells. However, doctors avoid conducting a biopsy in patients who have suspected testicular cancer as there is a small risk that making an incision in the scrotum could cause cancer cells to spread.  As such, the only way to confirm the diagnosis safely is to perform a unilateral orchidectomy.

Once the testicle has been removed, it will be sent to a laboratory and analysed for cancer cells.

References

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