call 1800 257 600 email [email protected]

Gardner Syndrome

Gardner syndrome is a variant of familial adenomatous polyposis (FAP) that has the characteristics of FAP with additional tumours outside of the gastrointestinal tract. Like FAP, it is caused by an alteration in the adenomatous polyposis coli (APC) gene, which is a type of tumour suppressor gene.

Familial cancer syndromes, also known as hereditary cancer syndromes, are rare conditions that cause an increased risk of cancer as the result of inherited genetic mutations in certain cancer-related genes. They can affect both adults and children, however they generally develop in people at a younger age than normal. While familial cancer syndromes are not classified as cancer, they are equally as severe and can be life-threatening as they are associated with the development of various tumours throughout the body. Having a familial cancer syndrome does not guarantee the development of cancer, however the risk of developing cancer is higher than those who do not have a familial cancer syndrome.

Gardner syndrome is generally diagnosed equally among the sexes, and is often diagnosed around the age of 25. However, people with this condition may start developing colon polyps during puberty, and anyone can develop this disease.

Gardner syndrome is most commonly associated with the development of colorectal cancers, however it has also been linked to other types of tumours. Some examples include:

Treatment

When cancers are detected, they are 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. However, each patient with Gardner syndrome will present with a unique disease behaviour, with varying tumour locations and symptoms. As such, there is no one treatment method that will work for everyone, and there is no standard staging system for this disease. Instead of staging and grading, your doctor will recommend a treatment plan based on the following factors:

  • Type of tumours present.
  • Whether the tumours are malignant (cancerous) or benign (non-cancerous).
  • Tumour location.
  • Whether or not malignant tumours have metastasised.
  • Your age.
  • General health.
  • Your treatment preferences.

Your doctor may also 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 options for tumours associated with Gardner syndrome may include:

  • Surgery to remove as much of the tumour(s) as possible – these will vary based on tumour type and location.
  • Chemotherapy.
  • Radiation therapy.
  • Nonsteroidal anti-inflammatory drugs (NSAIDs).
  • Clinical trials.
  • Palliative care.

Cancer Screening

Once a diagnosis of Gardner syndrome has been confirmed, implementing a targeted screening plan becomes essential due to the increased risk of developing certain cancers.  The content of this plan will vary from person to person based on the genetic mutation involved, your family’s history of cancer and the types of cancers that may be present. It will also outline the routine tests you should have and how regularly you should have them.  Some recommendations for Gardner syndrome may include:

  • Annual physical examination.
  • Annual colonoscopy or flexible sigmoidoscopy starting at age 10-12.
  • Annual thyroid ultrasounds starting between the ages of 10-20.
  • Gastroscopy every 1-2 years.
  • Abdominal ultrasounds and liver function tests every six months until age five in patients with a family history of hepatoblastoma.

Screening options for Gardner syndrome may evolve as new technologies are developed and our understanding of the condition grows. It is essential to discuss your individual circumstances with your healthcare team to determine the most appropriate screening plan for you.

Risk factors

Gardner syndrome is caused by a genetic mutation in the APC tumour suppressor gene, which acts to inhibit cell growth to prevent overproduction of cells and the development of tumours. It is an autosomal dominant disease, which means that you have a 50% chance of developing the condition if one of your parents carries the mutation.

Symptoms

The symptoms of Gardner syndrome often vary by the type(s) of tumours present. General symptoms of Gardner syndrome may include:

  • The presence of hundreds of polyps in the colon.
  • Abdominal pain and/or discomfort.
  • Changes in bowel movements, potentially including:
    • Diarrhoea.
    • Constipation.
    • Feeling of incomplete bowel movement.
    • Thin bowel stools.
    • Blood in stools.
  • Rectal bleeding.
  • Unexplained weight loss/loss of appetite.
  • Fatigue.
  • Anaemia.
  • Nausea and/or vomiting.
  • Abnormal skin lesions or cysts.
  • Bone pain.
  • Dental abnormalities.

Symptoms related to specific tumours can be found on our knowledgebase.

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 tumours associated with Gardner syndrome, they may order some of the following tests to confirm the diagnosis and refer you to a specialist for treatment. The tests required for diagnosis will often vary based on the symptoms present, and where the tumour(s) are suspected to be located.

  • Physical examination.
  • Genetic testing.
  • Blood tests.
  • Imaging tests, potentially including:
    • Ultrasound.
    • MRI (magnetic resonance imaging).
    • CT (computed tomography) scan.
  • Exploratory procedures, such as:
    • Colonoscopy.
    • Flexible sigmoidoscopy.
    • Other types of endoscopy as indicated.
  • Biopsy

References

Keep up with Rare Cancers Australia

Inside Rare is a monthly newsletter that shares the latest news, events and stories connecting the rare community.