• What Are Phaeochromocytomas?

    Phaeochromoytomas (pheochromocytomas), often known as ‘phaeos’ (‘fee-ohs’), are rare tumours of the adrenal gland which develop in the inner section of the gland called the medulla.

    The body has two walnut-sized adrenal glands, sitting on top of each of the kidneys (‘adrenal’ means next to the kidney). Even though the glands are small they are important as they produce several essential hormones. The medulla (the area of the adrenal gland from which phaeos arise) produces a number of hormones called catecholamines, mainly adrenaline (epinephrine) and noradrenaline (norepinephrine). These hormones help the body deal with maintaining blood pressure, deal with sudden stress or threats. Phaeochromocytomas may produce excessive amounts of these hormones, causing a variety of symptoms that can affect the whole body.

  • Phaeos occur in adrenal glands that sit on top of the kidneys
  • What is known about phaeochromocytomas?

    • Phaeochromocytomas are rare, occurring in 1 per 100 000 people per year
    • The majority (approximately 90% or 9 out of 10) are benign tumours (i.e. not cancer)
    • The most common age for diagnosis is between the ages of 30-60 years of age, although 10% arise in children
    • There is no sex difference or racial disposition
    • Tumours occurring in children are more likely to be related to an inherited condition than those occurring in adults

    Is there a genetic link?

    What are the symptoms of these tumours?

    Although they can grow for several years without serious symptoms, once functional, phaeos can cause a wide variety of symptoms which are mainly related to the release by the tumour of excessive amounts of hormone, mainly adrenaline and noradrenaline. Symptoms can occur intermittently often in episodes lasting only 15 minutes and may include some or all of the following:

    • Headaches
    • Dizziness
    • Facial paleness (pallor)
    • Excessive sweating
    • Racing heart rate (palpitations)
    • Panic attacks/ sense of doom
    • Anxiety
    • Weight loss
    • Heat intolerance
    • High (and rarely low) blood pressure (sustained or episodic)
    • Nausea (with or without vomiting)
    • Breathlessness
    • Depression
    • Lethargy

    Many of the symptoms listed above are related to the high blood pressure (hypertension) that can result from this tumour. It is thought less than one case of hypertension in every 1000-2000 patients is due to phaeochromocytoma. Hypertension in patients with undiagnosed phaeos can be very difficult to control; however, once a diagnosis is made, special drugs are widely available to help control it.

     

    For more detailed information on tests and treatments for phaeochromocytomas, please download the book below

Managing Through Hormone Surges

  • For the inaugural awareness week for phaeochromocytoma and paraganglioma syndromes, our Counsellor, Kym Winter, has developed an informational video and complementary short videos with different techniques to try to help yourself through hormones surges of functional tumours.

    *These techniques are not intended to replace any medicine prescribed or advice given by your specialist.

  • Hormone Surges: Managing Anxiety and Riding Out the Wave

  • Progressive Muscle Relaxation

  • Four Square Breathing

  • Focus and Ground

  • 5, 4, 3, 2, 1

Further Reading

  • In 2019 AMEND produced a new book on Phaeochromocytomas that can be downloaded for free below:

  • Phaeochromocytomas

    Produced in 2019 -  this booklet is primarily about non-inherited (sporadic) phaeochromocytomas.  We recommend that you discuss the content of this booklet with your specialist - it is not for use in self-diagnosis, and not all of the information it contains may be relevant to you.

  • Patient Stories

    Find out how other people were diagnosed with their phaeochromocytomas and how they are now.

Be involved