The UK's Only Dedicated Germ Cell Awareness Charity

What is germ cell cancer?

germ cell cancerGerm cells are the cells in your body that make up your reproductive cells – your sperm or eggs – and are found in your testicles or ovaries (or your gonads as they are formally known).

Types of germ cell cancer
• Testicular cancer
• Ovarian cancer
• Extra-gonadal germ cell tumours




Testicular Cancer

Germ cell stats & info
Testicular Cancer in a nut-shell:
• 2,000 men are diagnosed with testicular cancer each year in the UK
• 95% of all testicular cancers are germ cell tumours (please note, the signs and symptoms are the same for all testicular cancers)
• Average age range affected: 15-35 year olds
• 96% survival rate if detected at stage-1


Ovarian Cancer

Germ cell stats and info

An ovary-view of Ovarian Cancer:
• 1,500 women are diagnosed with ovarian cancer each year in the UK
• 1-2% of ovarian cancer are germ cell tumours (please note, the signs and symptoms are the same for all ovarian cancers)
• Average age range affected: up to age 40 for OGCC? Ovarian cancer 50+
• 90%+ survival rate if detected at stage-1


Mediastinal germ cell tumour

A germ cell tumour is a tumour that develops from your reproductive cells. They are sperm cells in the lads and egg cells in the ladies. So, naturally you would think germ cell tumours would develop exclusively in the testicles or the ovaries, right? Incorrect; germ cell tumours can grow in other areas of the body, such as the abdomen, brain or chest (the mediastinum). However, it is important to remember that these are still the same cells found in the gonads, just spread to other parts of the body.

The mediastinum is the area in the centre of your chest between the lungs. It contains your heart, windpipe (trachea), food pipe (oesophagus), large main blood vessels and the lymph nodes that surround your heart. So basically all the important stuff.

Germ cell tumours that grow outside the ovary or testicle (gonads) are very rare tumours. Doctors refer to them as extragonadal germ cell tumours (EGGCT’s for ease… Apparently). The mediastinum is the most common place for extragonadal tumours to develop.

Unfortunately doctors aren’t certain how these extragonadal germ cell tumours develop. There are some theories about how the cells get outside the testicle and ovary which include:

The cancer develops from very early cells that became misplaced during our development in the womb

The cancer started in the testicle or ovary and spread at a very early stage, but the original cancer has either disappeared or is too small to find.

Whatever the answer is, the most important thing is to DETECT THE EARLY WARNING SIGNS, which will help with a better diagnosis.

Types of mediastinal germ cell tumours

There are a number of different types of germ cell tumours that can develop in your mediastinum which are generally put into two main groups:

Non-seminoma germ cell tumours (including teratomas (of which some can be benign), choriocarcinoma, embryonal carcinomas and yolk sac tumours)


Symptoms of mediastinal germ cell tumours

Alas, if you have a tumour in the mediastinum you may not have any symptoms… You may be lucky and the doctor might spot the tumour on a chest X-ray you had for another reason; however, the symptoms to look out for are:

  • Shortness of breath
  • Pain in the chest
  • A persistent cough
  • Raised temperature
  • Rapid weight loss
  • Night sweats
  • A sudden change in bowel habits

As with most of our signs and symptoms, these could be warning signals for any number of ailments. WE URGE YOU to head straight to your doctors if you have any of the above. It may not be a mediastinal germ cell tumour, but you could have something else wrong with you none-the-less. ANY OF THESE SYMPTOMS could lead to a diagnosis, so don’t feel like you’re wasting anyone’s time or embarrassed to speak up. We here at The RCT know better than most that is better to safe than sorry, especially when it comes to your health.


Pineal germ cell tumour

pinealNever heard of it? You’re not alone… The pineal gland is found at the back of the third ventricle of the brain (take a look below!) Ventricles are fluid-filled spaces within the brain. The functions of the pineal gland are not fully understood but one function is to produce the hormone melatonin. Melatonin is involved in regulating your body’s ‘internal clock’, controlling when we sleep and when we wake.



Tumours of the pineal region

Cells within your brain normally grow in an orderly and controlled way. But if for some reason this order is disrupted, the cells continue to divide and form a lump or tumour.

A tumour may be either benign (non-cancerous) or malignant (cancerous). Although a benign tumour may continue to grow, the cells do not spread from the original site. In a malignant tumour, the cells can invade and destroy surrounding tissue and may spread to other parts of your brain.

Although this type of tumour is more common in adults, it can occur in children. For reasons unknown to us, it is more common in men than in women (as if cancer wasn’t bad enough, not it’s being sexist?). About 4,500 people are diagnosed with brain tumours each year in the UK. About 1 in every 100 (1%) of these tumours are in the pineal region.

Types of pineal tumours

Pineal-region tumours can be made up of different types of cells. The most common type of tumour in the pineal region is known as a germinoma. Germinomas develop from germ cells (cells in a very early stage of development). They are fast-growing and may often spread to other parts of your brain.

Other types of pineal tumour include:

  • Astrocytomas
  • Teratomas
  • Meningiomas
  • Pineocytomas
  • Pineoblastomas.

Causes of pineal tumours

As with most brain tumours, the cause of these tumours is unknown to us. Research is being carried out into possible causes, but as yet we have no viable answer. Sorry we can’t be of more help.

Signs and symptoms

  • Constant headaches; which are usually dull, constant and occasionally throbbing. Severe headaches are uncommon. A headache may get worse when you cough, sneeze, bend down or do any hard physical work. All of these tend to raise pressure in the brain. Headaches may be worse at night and may wake you.
  • Feeling sick (nausea) and vomiting can be worse in the morning than during the day. It may also get worse if you suddenly change position, for example from sitting or lying to standing.
  • Seizures (fits) which can include muscle spasms, which could be twitching or jerking of an arm or leg, or sometimes your whole body. Occasionally they can cause moments of unconsciousness. PLEASE NOTE; A seizure can be a frightening experience. If you have one you should seek medical help so that the cause can be diagnosed and treated. It’s important to remember that a seizure can be caused by medical conditions other than a brain tumour.
  • Drowsiness can happen as the pressure in the skull increases. You may find that you sleep more or that you drop off during the day when you wouldn’t normally.

As well as the symptoms described here, raised intracranial pressure can also cause changes to your sight, such as blurred vision, difficulty looking up, ‘floating objects’, problems focusing on close objects and tunnel vision. It may also make you confused or affect your coordination and balance.

If you experience ANY of the above symptoms MAKE SURE you head straight to the doctors or nearest A&E if you have a seizure or your symptoms worsen dramatically. You may not have a brain tumour, but these symptoms could be signs of a number of illnesses. REMEMBER; you’re not making it up, but it is all in your head.


Glossary of terminology
An explanation of terms you might have come across in reading our information
Stages of cancer
Germ cell
Survival rate
GP (medical professional)

If you, or a loved one, has been affected by germ cell cancer in any way then please feel free to contact us. Alternatively, please visit our resources page to view a list of trusted charities that are also happy to hear from you and may be able to help you in ways which we can’t (being a purely awareness-based charity). This may seem odd, but we’re all in this together, fighting the same fight and we just want to support people affected by this horrible disease.

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