25. Management of breast cancer in women

In this series featuring information for patients and professionals taken from evidence-based guidelines, we reproduce the ‘information for discussion with patients and carers’ section from the 2005 SIGN guideline Management of breast cancer in women.

Patients and carers want information to help them understand and cope with the diagnosis of breast cancer, the treatment options available and the care they can expect from the health professionals they meet.

A literature search of patient views and experiences was carried out to inform the development of this guideline. One of the major themes that emerged was concern that the information needs of cancer patients are not met during their journey of care.

A one day workshop, on the broad issues of information needs and resources relating to any aspect of the disease, was held to gather views and suggestions from a group of women who all have direct experience of treatment for breast cancer.

This was attended by 29 women from eight different health board areas in Scotland.Their age at diagnosis varied as follows: 30-39 years (n=1); 40-49 years (n=10); 50-59 years (n=12); 60- 69 years (n=5); not specified (n=1).

Patients were asked to consider the information they have received throughout their journey of care, and the information they would have liked to have received.

Five common themes emerged:

  • delivery of information
  • results of investigations
  • side-effects of treatment
  • information for carers
  • home care/follow-up.

The manner in which important information was provided appeared to impact on both the relationship between the clinical staff and the patient and the patient’s ability to understand and absorb it. The most effective ‘care partnerships’ were those where the patients’ individual wishes regarding information and involvement were acknowledged by their clinicians and determined the nature of their communications.

A need for clear, accurate information given face to face was identified. Decisions given over the telephone, conflicting or mislaid information from clinicians and poor communication across the different health settings (primary, secondary and tertiary) created increased anxiety for patients.

Information was required about both NHS organisations and cancer charities that can offer further information in a verbal, written and visual format.

Frequently asked questions:

  • Where can my family and I find further information?
  • What are my treatment options?
  • Could you write down my treatment plan?
  • Is there someone I could see before my next appointment?
  • Will my GP know my results?

A rapid referral from primary to secondary care was considered important to psychological wellbeing but this was sometimes delayed, as women were not always aware that a likelihood of breast cancer was being considered by the GP.

There was no consistent approach to providing information about the triple assessment and many women were unaware of what to expect as they moved from primary to secondary and tertiary care. GPs, consultants and breast care nurses were considered gatekeepers to information about results and their approach to patients was very important.

Frequently asked questions:

  • To the GP – what are you looking for?
  • How long will I wait for an appointment?
  • Will I be seen at my local hospital?
  • What is the name of the doctor who will see me?
  • What will happen at the hospital?
  • Could you write this down for me?
  • Is there any information that I could read?
  • When will I get the results?
  • Who will give me the results?

There were a number of treatments that were believed to cause significant side-effects including surgery, chemotherapy and radiotherapy.

The common theme was that the quantity and quality of information about side-effects was insufficient and, at times, given in an ad hoc manner. The majority of participants had not received written information or taped consultations, and there appeared to be no consistent approach to updating and adding to the information given or the use of published materials.

There was some very positive feedback about using a record book while undergoing chemotherapy to record the different side-effects experienced.

Frequently asked questions:

  • What does the surgery involve?
  • Are there any side-effects of surgery?
  • How long will I need to stay off work?
  • What does the scar look like?
  • What are the side-effects of chemotherapy?
  • Can I have information on the specific chemotherapy drugs I am on?
  • Can I have information about radiotherapy; zoladex; tamoxifen; arimidex (or the name of the drug you are on)?
  • Who will be in charge of my care?
  • Who do I contact if I have a particular concern?

Information for the patient’s personal support networks, i.e. family, carers and friends,was very important. They also need to be involved in consultations when considered appropriate by the patient.

Specific issues were identified that addressed different age groups of women.Younger women raised concerns about the impact of the diagnosis on young children, relationships and employment. Ethnic minorities had limited access to written information that is both culturally appropriate and in the correct language.

Women or their carers who had poor reading skills, were visually impaired or deaf, needed to be able to access a range of information other than written material. This may include tapes, video material including British sign language signing and modified pictorial information.

Frequently asked questions:

  • Can my partner, carer, friend come into the room with me?
  • Are their places for my carer to access support?
  • Is there somewhere we can get advice about benefits?

There were significant variations between women’s experiences of aftercare. Some found their GP and breast care nurse a great source of support while others felt abandoned and isolated without knowing whom to contact. Women had a number of concerns about recurrence, practical support including wigs and prostheses, psychological support and ongoing follow-up care.

Frequently asked questions:

  • Who fits my prosthesis?
  • How often can it be replaced?
  • Do I have to pay for it?
  • Who do I contact when my treatment is finished in the hospital?
  • Does my GP know what treatment I have had?
  • How often will I be followed up?
  • Who will do the follow-up?
  • Will they do additional tests?
  • How will I know if the cancer is back?
  • Are there any support groups I can attend?
Box 1: Sources of further information for patients and carers

Breast Cancer Care

4th floor, 40 St Enoch Square, Glasgow G1 4DH
Tel: 0845 077 1892
Fax: 0141 221 9499
Email: sco@breastcancercare.org.uk
Web: www.breastcancercare.org.uk
Breast Cancer Care provides information, practical assistance and emotional support for anyone affected by breast cancer.

Macmillan Cancer Relief

89 Albert Embankment, London, SE1 7UQ
Tel: 0808 808 2020 (freephone — CancerLine); 020 7840 7840 (head office)
Web: www.macmillan.org.uk

Cancer Research UK

PO Box 123, Lincoln’s Inn Fields, London,WC2A 3PX
Tel: 020 7121 6699 (supporter services); 020 7242 0200 (switchboard)
Web: www.cancerresearchuk.org

CancerBACUP

3 Bath Place, Rivington Street, London, EC2A 3JR
Tel: 020 7696 9003 0808 800 1234 (freephone help line, Monday-Friday 9am-7pm; 020 7739 2280 (standard rate — information helpline)
Web: www.cancerbacup.org.uk

CancerBACUP Scotland

Suite 2, 3rd Floor, Cranston House, 104-114 Argyle Street, Glasgow, G2 8BH
Tel: 0141 223 7676; 0808 800 1234 (freephone help line, Monday-Friday 9am-7pm)
Fax: 0141 248 8422
Web: www.cancerbacup.org.uk
Offers a free cancer information service staffed by qualified and experienced cancer nurses.There are a growing number of CancerBACUP centres in hospitals and a freephone information service on all types of cancer, staffed by specialist cancer nurses. Produces more than 50 booklets, and ‘CancerBACUP News’ three times a year.

Maggie’s Centres

The Stables, Western General Hospital, Edinburgh, EH4 2XU
Tel: 0131 537 3131
Fax: 0131 537 3130

The Gatehouse, Western Infirmary, 10 Dumbarton Road, Glasgow, GL2 0YN
Tel: 0141 211 0122
Fax: 0141 211 3988
Email: maggies.centre@ed.ac.uk
Web: www.maggiescentres.org
The goal of Maggie’s is to keep people who have cancer as healthy in mind and body as is possible, by enabling them to participate actively in the treatment of their disease.

Cancer VOICES

Web: www.cancervoices.org.uk
A UK-wide network of people affected by cancer who are helping to shape the future of cancer care supported by Macmillan Cancer Relief.

Adapted from Management of breast cancer in women (SIGN 84)

Guidelines in Practice, February 2006, Volume 9(2)
© 2006 MGP Ltd
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