understanding tumours
by Rachel Newcombe
The mere thought of a tumour can strike fear in our minds, but not all tumours necessarily mean cancer. Many people experience benign tumours, such as moles, during their lifetime, but for those with the condition neurofibromatosis (Nf), the likelihood of tumours suddenly appearing is much higher. What's more, in a few Nf cases tumour growth is rapid, resulting in added worry and complications.
© iStockphoto
A tumour is a lump or growth of tissue that can form in various parts of the body and there are two main types, benign and malignant. Benign tumours are usually totally harmless, they're not cancerous, and they grow slowly and don't spread or invade other healthy tissue. Quite often they can be happily left where they are without the need for removal.
In contrast, malignant tumours are cancerous. Compared to benign tumours, they grow quickly, invade other tissues and organs in the body and can be very damaging. Malignant tumours spread easily and often result in secondary tumours on other parts of the body, which in turn, spread and spread and they need to be removed.
Finding a lump can be a really scary experience – it's normal to panic and worry that it might be cancerous, and to feel embarrassed if it's on a breast or testicle. But although you might want to ignore it and pretend it's not there, getting it checked out is crucial. 'If you find a lump or notice changes, for example in your breast, then see a doctor straight away, without delay,' advises Dr Lesley Walker from Cancer Research UK (CRUK).
In many cases, and especially in younger people, lumps turn out to be benign and harmless, but knowing that will at least put your mind at rest. If a lump does turn out to be malignant or cancerous, the chances of it being successfully treated are improved if it's caught early, making getting it seen quickly even more important.
troublesome benign lumps
There are hundreds of different types of benign and malignant lumps, but in most cases a benign lump is safe and won't turn into cancer. Sometimes, though, benign lumps can become troublesome and need attention. 'If they grow bigger, become uncomfortable or unsightly or start to press on vital body organs, then it's often better to have them removed,' explains Dr Walker.
There are also some occasions where it's hard for a doctor to tell if a lump is definitely benign, or if it may have the potential to become malignant. In this case it's important to keep an eye on the lump and watch for any changes, as well as see a doctor regularly to have it checked. For example, moles are one of the most common forms of benign lumps but, CRUK warn, 'If a mole develops a ragged edge, becomes inflamed, bleeds, crusts over, oozes, has different colours, feels funny, itches or gets much bigger than your other moles, see a doctor immediately.'
neurofibromatosis
For people with neurofibromatosis, tumours are a much more common occurrence. Neurofibromatosis (Nf) is a type of genetic disorder that causes tumours, mostly benign, to grow on all types of nerves in the body. There are two forms of Nf, called Nf1 and Nf2, of which the most common is Nf1, which affects about 1 in 4000 births worldwide.
Some of the characteristics of Nf1 are the appearance of a group of light brown spots – often referred to as 'café-au-lait spots' – on the skin, pea-sized bumps on or under the skin (neurofibromas) and enlarged areas on the skin. The Nf2 form is much rarer, affecting about 1 in 40,000 people, and involves the development of multiple tumours on the head and spinal nerves. Tumours often also affect the ears and sufferers can frequently experience some loss of hearing.
'In fifty per cent of cases Nf is inherited from a parent, and in the remaining cases, it occurs as a result of a new or spontaneous change in the sperm or egg cell,' explained a spokesperson for the US National Neurofibromatosis Foundation (NNNF).
With Nf as a whole, there's a fault in the gene that regulates cell division, resulting in cells starting to divide out of control. This causes benign tumours called neurofibromas to grow on the nerves. Mostly these tumours are quite small, but on occasions they can grow large.
In the case of Romanian woman Lucica Bunghez, seen in Channel 4's Megatumour, her Nf tumour grew at an astonishing rate of about 3lb per month, eventually resulting in a massive 11 stone tumour. By that stage, it was feeding off her body like a parasite and would have killed her if it hadn't been removed. As scary as it sounds, Lucica's case is thankfully pretty rare, as the majority of Nf tumours don't grow so huge.
help and support for Nf sufferers
'Most tumours, even large ones, caused by Nf are benign and remain benign,' say the NNNF. 'However, in rare cases they become malignant.' Because of this, it's important for anyone with Nf to have regular check-ups and watch out for any tumour growth, as well as sudden pain, numbness or tingling. Additionally, some lumps can grow in awkward places, so it's important to keep an eye on tumours and see a doctor regularly to check they're not becoming dangerous. If they are, then they may need to be operated on and surgically removed.
Whilst most signs of Nf1 appear during childhood or adolescence, and signs of Nf2 appear during the 20s, it is possible for both forms to remain undetected until older ages. Discovering you, or someone you know, has got Nf can be a bit of a shock, but there is help and support available for Nf sufferers in the UK.
Organisations such as the Neurofibromatosis Association (see help and info) offer a good starting point for the newly diagnosed, as well as those who've been living with Nf for longer, and they can provide help and information about the condition.
Whether you've got Nf or not, it can be alarming to find a tumour. There's no point worrying in silence, so check out any changes with your doctor and, remember, many tumours turn out to be benign and harmless.
help and info
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organisations
CancerBACUP
3 Bath Place
Rivington Street
London EC2A 3JR
Helpline: 0808 800 1234 or 020 7739 2280 (Mon-Fri 9am-8pm)
Tel: 020 7696 9003 (Mon-Fri 9am-5.30pm)
Website: www.cancerbacup.org.uk
Provides up-to-date information on every type of cancer as well as advice and support to cancer patients, their families and friends on all aspects of cancer and its treatment. The helpline, above, is staffed by specialist cancer nurses.
Cancer Research UK
PO Box 123
Lincoln's Inn Fields
London WC2A 3PX
Tel: 020 7061 8355 or freephone 0808 800 4040 (Mon-Fri 9am-5pm cancer information nurses)
Textphone: 020 7061 8484 (cancer information nurses)
Tel: 020 7242 0200 (switchboard)
E-mail: cancer.info@cancer.org.uk
Website: www.cancerresearchuk.org
Patient information site: www.cancerhelp.org.uk
Charity dedicated to research on the causes, treatment and prevention of cancer. Website has lots of information about cancer, and details of events in local areas.
Neurofibromatosis Association
Quayside House
38 High Street
Kingston on Thames
Surrey KT1 1HL
Tel: 020 8439 1234
Minicom: 020 8481 0492
E-mail: info@nfauk.org
Website: www.nfauk.org
Provides support and information to those affected by either form of neurofibromatosis, their families and professionals, by employing a team of hospital-based professional Neurofibromatosis Specialist Advisors as well as encouraging the establishment of local groups and volunteers throughout the UK. Also funds research into both types of neurofibromatosis and provides activity holidays and breaks for children and adults with either form of neurofibromatosis. They also raise awareness through fundraising activities.
National Neurofibromatosis Foundation (NNNF)
95 Pine Street, 16th Floor
New York, NY 10005
USA
Tel: 00 1 212 344 6633 (USA number)
E-Mail: NNFF@nf.org
Website: www.nf.org
A non-profit medical foundation, dedicated to improving the health and well being of individuals and families affected by Nf. The website has information about Nf, online publications and resources and a chat room.
Children's Tumour Foundation
95 Pine Street, 16th Floor
New York, NY 10005
USA
Tel: 00 1 212 344 6633 (USA number)
E-Mail: NNFF@nf.org
Website: www.nf.org
A non-profit medical foundation, dedicated to improving the health and well being of individuals and families affected by Nf. The website has information about Nf, online publications and resources and a chat room.
websites
Gillian Anderson
www.gilliananderson.ws/charities/nf.shtml
The X-Files actress became involved with neurofibromatosis charities when her brother was diagnosed with Nf1.
Blazing a Genetic Trail
www.hhmi.org/genetictrail
A site for anyone interested in the genes that cause genetic disease, with information on current research.
Contact a Family
www.cafamily.org.uk/Direct/n27.html
Article about neurofibromatosis from the organisation for families with disabled children.
Helping Your Child Cope with Neurofibromatosis
http://bcnf.bc.ca/helping_your_child.htm
In depth article by Helen Hand, Ph.D.
Lumps and Bumps
www.bbc.co.uk/health/conditions/lumps1.shtml
Information from the BBC site about different lumps and benign versus malignant tumours.
National Organisation for Rare Disorders
www.rarediseases.org
Has an A to Z listing of rare diseases and a rare disease database.
Neurofibromatosis Resources
http://neurosurgery.mgh.harvard.edu/NFR
Some of the best neurofibromatosis information available compiled by Carol Arie in the US whose partner has Nf1.
NF Bulletin Board
https://www.ctf.org/cgi-bin/bb/ultimatebb.cgi
A public forum for people with Nf and parents, friends, partners, carers, teachers, etc.
Nf2 Crew
www.nf2crew.org
A private support group focused around Nf2 with worldwide membership. Virtually all of the members either have Nf2 or a member of their family does. Tons of resources.
The Riddle of the Elephant Man
www.channel4.com/science/microsites/S/
science/body/bodyshock_elephantman.html
There is some opinion that Joseph Merrick's deformities of bone, skin and nervous tissue were due to neurofibromatosis – read the article here.
Testicular Lumps
www.netdoctor.co.uk/menshealth/facts
/checkingtesticles.htm
Information about testicular lumps and self-examination from the NetDoctor site.
What Are You Staring At?
www.channel4.com/health/microsites/0-9
/4health/body/sur_disfigurement.html
An article on facial disfigurement from Channel 4's Health site, with sources of support.
When Your Face Doesn't Fit
www.bbc.co.uk/health/conditions
/neurofibroma1.shtml#genetic_factors
Article accompanying a BBC programme on neurofibromatosis.
reading
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Visibly Different: Coping with disfigurement edited by Richard Lansdown, Nichola Rumsey, Eileen Bradbury and Tony Carr (Hodder Arnold, 1997) |
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Neurofibromatosis: A handbook for patients, families and health care professionals edited by Bruce Korf and Allen Rubenstein (Thieme Publishing Group, 2005) |
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Neurofibromatosis – A medical dictionary, bibliography, and annotated research guide to internet references (Lightning Source UK, 2004) |
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(February 2005)
