University College Hospital. Metastatic spinal cord compression (MSCC) information for patients at risk of developing MSCC.

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1 University College Hospital Metastatic spinal cord compression (MSCC) information for patients at risk of developing MSCC Cancer Services

2 2 If you would like this document in another language or format, or require the services of an interpreter, contact us on or extension We will do our best to meet your needs. Contents Introduction 3 What is metastatic spinal cord compression (MSCC)? 3 What should I look out for? 4 What should I do? 5 What will happen next? 5 Useful national contact numbers 7 Useful information and contact numbers Patient Hospital Number:... Clinical Nurse Specialist (CNS)/Key Worker:... CNS/Key Worker telephone (Monday to Friday 09:00 to 17:00):... If unable to contact CNS/Key worker, please call the patient 24/7 Urgent Advice Line Oncology 24 hour Urgent Advice Line: Haematology 24 hour Urgent Advice Line:

3 3 Introduction This leaflet is about a very rare condition called metastatic spinal cord compression (MSCC). It can affect patients with certain cancers that have spread (metastasized) to the bones in the spine, or have started in the spine. This leaflet has been given to you so that you know what signs and symptoms to look out for, and what to do in case your cancer affects you in this way. Metastatic spinal cord compression is an emergency, and you will need to contact your doctor immediately if you experience the symptoms described in this leaflet. If you can recognise these early symptoms and get treatment quickly permanent damage, and even paralysis, may be avoided. What is metastatic spinal cord compression (MSCC)? The spinal cord is the group of nerves that runs down the back inside the bones of the spine (vertebrae). It provides nerves to all parts of the body including the bladder, arms and legs. If you have a tumour in the bones of the spine or in the tissue surrounding the spinal cord, it can cause pressure (compression) on the spinal cord and nerves. This can cause pain, altered sensation and weakness. If left untreated it can cause permanent damage and even lead to paralysis. Any type of cancer can spread to the bones of the spine, which may lead to MSCC. However, it is more commonly seen in people with cancers of the breast, lung and prostate, and people who have lymphoma or myeloma.

4 4 What should I look out for? If your doctor has told you that you may be at risk of MSCC, or you think you might be, let your doctor know immediately if you have any of the following symptoms: Back pain anywhere from your neck downwards. The first symptom is usually an unexplained back pain which may be mild to begin with, but lasts for more than one to two weeks. The pain may feel like a band around your chest or abdomen, and can sometimes radiate over the lower back, down into the buttocks and legs. Numbness or pins and needles in your toes, fingers or over the buttocks. Feeling unsteady on your feet, having difficulty walking, or your legs giving way. Problems passing urine. These may include difficulty controlling your bladder, passing very little urine, or passing none at all. Constipation or problems controlling your bowels. Back pain made worse by coughing, sneezing or straining. Back pain which stops you from sleeping. These symptoms can also be caused by a number of other conditions. It is very important to let your doctor know if you have any of these symptoms so that they can be investigated. Remember, MSCC only occurs in a very small number of patients. The earlier MSCC is diagnosed, the better the chances of the treatment being effective in improving your quality of life.

5 5 What should I do? If you have any of the symptoms described: Try to bend your back as little as possible. Talk to your GP, doctor, specialist nurse or key worker as soon as possible (certainly within 24 hours). Tell them you have cancer, describe your symptoms and tell them you are worried about your spine. What will happen next? A doctor needs to examine you. If your doctor is concerned that you might have MSCC, he or she will send you straight to hospital so that you can have an urgent scan of your back. If the tests show that you have MSCC your doctors will discuss the best treatment options with you. Treatment should be started as soon as possible after diagnosis. This is to prevent permanent damage to the spinal cord. The choice of treatment depends on several factors, including the type of cancer you have, the area of the spine affected and your general health. There are some risks associated with treatment to the spine and your doctors will discuss these with you. The aim of treatment is to shrink the tumour and to relieve pressure on the nerves, and improve your quality of life. You may choose not to have treatment, and if so, your doctor will explain what may happen if you do not, and how they will support you.

6 6 Radiotherapy is the usual treatment for MSCC, but some people may need surgery or chemotherapy. You will also be prescribed high dose steroids (Dexamethasone) to reduce the pressure and swelling around the spinal cord, and to relieve any pain you may be experiencing. If you are diabetic, or have had problems with steroids in the past, please tell your doctor. You may need to be admitted to hospital or your doctor may advise complete bedrest, to prevent any further damage to your spinal cord caused by unnecessary movement. If the tests show that you do not have MSCC your doctor will answer your questions and make sure your symptoms are under control. If you need further help and advice, please do not hesitate to contact your specialist nurse or key worker. If MSCC goes untreated, or if there is a delay in treatment, it can lead to permanent damage and even paralysis. Early diagnosis and treatment gives the best chance of an effective outcome.

7 7 Useful national contact numbers Macmillan Cancer Support Freephone Helpline: Textphone: (Monday to Friday 09:00 till 21:00) Cancer Help UK Freephone Helpline: (Monday to Friday 09:00 till 17:00) Carers UK Freephone Helpline: (Wednesday and Thursday 10:00 till 12:00 and 14:00 till 16:00) Cancer Research UK National Library for Health NHS Direct Telephone: NHS Choices Patient UK (available 24 hours)

8 First published: November 2011 Last review date: June 2013 Next review date: June 2015 Leaflet code: UCLH/S&C/C/RADTHPY/MSCC/02 University College London Hospitals NHS Foundation Trust Created by Medical Illustration RNTNEH Unique Code: 28483

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