when does life cost too much?
by Jenny Bryan
When Louise's right eyelid started drooping during her pregnancy, doctors diagnosed a form of nerve damage that did not need immediate investigation. But a brain scan six months after the birth of her daughter discovered a tumour in the middle of her head that required a 12-hour operation, followed by six weeks of chemotherapy and radiotherapy. The side effects of the chemotherapy made Louise so ill that she considered stopping it, but her husband, Tim, encouraged her to keep going:
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'Before, she was a fit and healthy person and the treatment made her ill. It turned her into a sick person and that was a very difficult thing to get your head around,' Tim recalls.
He and Louise knew that the treatment was unlikely to cure the cancer. But both wanted to do all they could to ensure that Louise lived long enough for her daughter to grow up remembering her mother.
Two years later, Louise's brain tumour did come back and her consultant told her that, without treatment, she was likely to live for about a year – six months of which should be good quality time. A course of chemotherapy could add a few months to her life expectancy but at some cost to her quality of life.
'We really appreciated the fact that he wasn't pussyfooting around the issue. If we'd demanded chemotherapy, I'm sure someone would have given it. But it wouldn't have given us enough time to be worth the suffering,' Louise explained.
Being honest about the pros and cons of cancer treatment isn't always easy for doctors, says leading British specialist, Professor Karol Sikora, from Hammersmith Hospital, London:
'I think that all patients undergoing chemotherapy believe they're going to be cured by it and, in six months time, they'll be able to walk out free of cancer. That's the dishonesty of the business. We, as doctors, tend not to confront people with the reality. We like people to have hope because it's easier to deal with someone who has hope that they can live for ever.'
life at any price
Liz only gave up hope that chemotherapy could prolong her life a few days before she died of ovarian cancer. She spent nine months of the two and a half years that she lived after her diagnosis undergoing chemotherapy – two courses of conventional and one of experimental treatment which made her sick and ill and meant that she lost her hair (see 'chemotherapy' in the abc of body). Her treatment bought her an estimated six months of extra time, but she expressed no regrets and felt she just had to 'bash on'.
'It made me feel bad for a while but then you get on with your life,' said Liz after her first treatment. 'You take antibiotics for tonsillitis, you take chemotherapy if you've got cancer.'
options for living
One in three people get cancer at some time in their life, and one in four die from it. Lung cancer is the most common form of the disease in men, breast cancer in women. While the outlook for those with testicular cancer and some forms of blood and bone marrow cancer has improved considerably in recent decades, the prognosis for those with more common forms of cancer, such as that of the lung, bowel and ovary, remains less good.
When Liz's ovarian cancer recurred only four months after her first course of chemotherapy, her chances of living for a year after her second course of treatment were about 10%.
'You're buying a little bit of time,' says Professor Sikora. 'It's not a whole year because you're going to get some of that year anyway, whether or not you have chemotherapy. What the second line chemotherapy can do in ovarian or lung cancer is extend survival by a few months.'
how long will I live?
Doctors accept that they are notoriously bad at predicting just how long someone is going to live with cancer (see cancer – your right to choose), and the best they can do is base their estimates on experience from other cases.
'When people ask how long they've got to live, the only statistic doctors can quote is the median survival. This is the time when the middle person in a collection of people dies,' explains Dr Mark Bower, from the Chelsea and Westminster Hospital, London.
'The median survival for stage 4 [advanced] ovarian cancer is about 18 months, so if you have 100 women with the disease, the 50th will die at 18 months. But the 100th may live a very much longer time and it's impossible to guess where a woman is on that spectrum,' he adds.
beating the odds
Hugh was given just three months to live when his lung cancer was diagnosed. The tumour was so large it had blocked one of the main airways in Hugh's left lung and his doctors felt there was nothing they could do except make him comfortable and treat his pain with morphine. Two years on, X-rays revealed no sign of his tumour and, although Hugh remained frail, his pain was gone and he was able to shop, get about, even achieve his hope of taking a ride on the London Eye with his great-niece, Sarah.
Taking a positive approach to his lung cancer undoubtedly helped Hugh in his battle against the odds and so did having goals in his life. (See also the feature against the odds.)
'Where people have definite aims that give them some meaning in life, they often are able to live longer than expected, achieve those aims and then die,' explains Dr Stephen Greer, from St Raphael's Hospice.
In the end, the odds did beat Hugh, his lung cancer returned and he died peacefully as a result of pneumonia.
'The last time I saw him, he said, "I don't think it's going to be very long." He's always been very upbeat, but he told me that he'd had enough and that he was tired and fed up and he didn't want to go on much longer,' Sarah explains.
making decisions
It isn't everyone who can beat the odds. Louise died four and a half years after her brain tumour was diagnosed. She had six weeks of chemotherapy and two years of good quality time with Tim and her daughter. As her health declined, it was hard for Louise to adapt to the limitations of life but, for her, the decision to spend quality time with her husband and daughter rather than try to prolong her life was the right one.
Professor Sikora believes that it makes more sense to use medication and other treatments to enhance the quality of the time left to people nearing the end of their life than to spend the large sums currently used to prolong life, often with serious side effects for patients.
'It would make much better sense to emphasise quality of life and to do things including medication that enhance quality of life rather than prolonging it for a few weeks,' he believes. 'I can be very positive about the future of cancer because I think we will make it a chronic, controllable illness, but not today. I think we need to be far more honest about things and what chemotherapy really means, because when people relapse six months later they feel betrayed by the whole system. We need to confront the issue from the start.'
help and info
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organisations
British Heart Foundation
14 Fitzhardinge Street
London W1H 6DH
Heart Information Line: 08450 70 80 70 (Mon-Fri 9am-5pm)
Website: www.bhf.org.uk
Plays a leading role in the fight against heart disease and provides a range of information about the causes, prevention and treatment of the problem. Website contains a glossary, details of publications, plus practical advice on how to protect yourself from heart disease.
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, advice and support to cancer patients, and their families and friends on all aspects of cancer and its treatment, and on the practical and emotional problems of living with the illness. The helpline, above, is staffed by specialist cancer nurses.
Cancer Research UK
PO Box 123
Lincoln's Inn Fields
London WC2A 3PX
Tel: 020 7242 0200
Website: www.cancerresearchuk.org
Dedicated to research on the causes, treatment and prevention of cancer, with the aim of controlling the disease within two generations.
Macmillian Cancer Relief
89 Albert Embankment
London SE1 7UQ
Cancerline: 0808 808 2020 (Mon-Fri 9am-6pm)
Textphone: 0808 808 0121
E-mail: cancerline@macmillan.org.uk
Website: www.cancerlink.org
Contact the freephone Cancerline, staffed by people with experiences of cancer, for cancer information and support, details of local organisations, and relevant publications and other resources.Website has further information.
Tenovus
43 The Parade
Cardiff CF24 3AB
Helpline: 0808 808 10 10 (Mon-Fri 9am-4.30pm)
Website: www.tenovus.com
Offers information on all aspects of cancers and their treatments, as well as emotional support for cancer patients and their families. Calls are answered by oncology nurse specialists and social workers. Website has further information.
websites
Shadow in Tiger Country
www.shadowdiary.com
Louise's online diary containing her thoughts, photos and views on living with terminal cancer. Now maintained by her husband Tim.
British Cardiac Patients Association
www.bcpa.co.uk
The patient and carers independent voice. Offers help, support, advice and reassurance to all cardiac patients, their families and carers. Provides advice on how to prevent heart disease and stay healthy.
Cancer Index
www.cancerindex.org
A guide to the internet resources available for cancer. Includes UK based organisations, a guide to medical terminology and over 4,000 links to cancer sites.
National Cancer Institute – CancerWeb
http://cancerweb.ncl.ac.uk/cancernet
Detailed site providing information and links for both patients and health professionals on many different aspects of cancer, investigation and treatment.
Net Doctor – Heart Failure
www.netdoctor.co.uk/diseases/facts/heartfailure.htm
This article discusses what heart failure is – its causes, symptoms and treatments.
Patient Information – Chemotherapy
www.royalmarsden.org.uk/patientinfo/booklets/chemotherapy/index.asp
Online information booklet produced by the Royal Marsden Hospital providing extensive information about chemotherapy.
reading
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Choices in Healing: Integrating the Best of Conventional and Complementary Approaches to Cancer by Michael Lerner (The MIT Press, 1996) |
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Complementary Cancer Therapies: Combining Traditional and Alternative Approaches for the Best Possible Outcome (Crown Publications, 2000) |
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Intimate Loneliness: Supporting Bereaved Parents and Siblings by Gordon Riches and Pamela Dawson (Open University Press, 2000) |
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(July 2002, resources updated January 2005)
