Some oncology units provide patients with a hand held file - At Bedford and Cambridge for example an easy to carry A5 file is given to the patient to take home. It is designed to carry A4 paper folded in half.  Specific written information can be updated at any stage in the patient’s management depending on individual sides effects and needs. Sheets can be downloaded free from cancernet.co.uk. The GP/surgeon also have the opportunity of accessing the same information as the web addresses for each sheet is included in the standard letter. The contents of the file would be best described by an example of an actual case report:-

Mrs X, a 52 yr lady had surgery (lumpectomy & axillary clearance) for  breast cancer. She required chemotherapy (adriamycin & cyclophosphamide) using a cold cap system.  Her file initially contained the following sheets:

[1] What is chemotherapy?
[2] Specific side effects and advice for adriamycin & cyclophosphamide chemotherapy
[3] Information on the cold cap system          
[4] General lifestyle issues and chemotherapy
[5] Local routine and emergency contact number eg The primrose Unit
[6] A copy of the advise sheet sent to the GP

In the mean time Mrs. X has also seen her GP to discuss treatment. Her GP was able to look up the side effects of  AC on cancernet.co.uk. During chemotherapy, despite the cold cap, Mrs X experienced hair loss plus some reduced appetite, mild nausea, fatigue and mouth soreness.  Sheets added:

[7] Coping and dealing with hair loss   
[8] Coping with a poor appetite and nausea
[9] Coping with fatigue                            
[10] Coping with a sore mouth

Following chemotherapy she received radiotherapy to the breast. Her nurse advised her that she may be approached to entered a clinical and asked for background information on research. She also felt ready to discuss her disease with others and wanted a list of support groups. Sheets added:

[11] What is Radiotherapy?                       
[12] Radiotherapy to the breast 
[13] What is a clinical trial?                       
[14] Support groups

She had a slight skin reaction. She was encouraged to continue her shoulder exercises. Sheets added:

[15] Care of the skin during radiotherapy     
[16] Exercises after breast surgery and radiotherapy

At the end of her radiotherapy she was started on tamoxifen. Sheets added:

[17] What is hormone therapy                       
[18] Specific side effects and advice for Tamoxifen 

Later Mrs X had a number of lifestyle concerns - she expressed a wish to stop smoking, wanted to do more exercise. She also wanted further information on genetic family risks. Sheets added:

[19] Advice on how to quit smoking          
[20] Exercise & cancer
[21] Breast cancer & genetic family risk 

Later Mrs X developed menopausal symptoms, particularly hot flushes. By this stage she had a computer, was familiar with cancernet.co.uk was able to down load herself the following sheets:

[22] Coping with the menopause                 
[23] Advice on Hot flushes

Further general information Your doctors and specialist nurses are in an ideal position to give you relevant information on your disease and treatment as they know your individual circumstances. Cancerbackup has a help line (0808 800 1234) and a prize winning video available in English, Italian, Urdu, Bengali, Gujarati & Hindi explaining Radiotherapy & Chemotherapy. Cancernet.co.uk has over 500 pages describing cancer, its management, practical tips and tool which patients, their carers and their doctors have found helpful during the cancer journey.