Experts highlight gaps in knowledge on caring for survivors of teenage and young adult cancers

June 10, 2008

London, UK: Over 95% of patients with testicular cancer are cured nowadays, but this success has produced a new problem for cancer survivors, the medical profession and national governments, a cancer expert will tell Teenage Cancer Trust's Fifth International Conference on Teenage and Young Adult Cancer Medicine, which is meeting in London on Monday and Tuesday (June 9 and 10).

Dr Craig Nichols, director of program development and director of the germ cell tumor and lymphoma program at the Providence Cancer Center (Oregon, USA) will tell the conference: "Patients with testicular cancer, and, indeed, several other of the more treatable cancers, have great expectations of a cure, but this also imparts an additional responsibility of ensuring that the medical and social consequences of the disease and the cure have a minimum impact.

"We are returning an extra 50-60 years of life to teenagers and young adults who have been treated successfully for cancer. This shifts the emphasis from 'can we cure this disease?' to 'can we retain this near perfect cure rate as well as reducing the short and long term side effects of treatment, minimising the fertility consequences of therapy, reducing the long term risk of a second cancer and metabolic syndrome, and developing pre-emptive strategies for managing psychosocial consequences of cancer and cancer treatment at a young age?'.

"The medical profession and national governments need to develop strategies for meeting this challenge. They need to recognise that care cannot just stop when the patient is cured of the cancer, and that there is a huge cost still to be faced in terms of long-term care and support and in terms of collateral damage. Maximising the chances for good health for the next 50 years of life has very calculable social benefits, and people are beginning to realise this now. This is a fundamental shift."

Nearly three-quarters of children with cancer survive into adulthood, but a north American study has shown that, 30 years after diagnosis, 42% are affected by severe disease or a life-threatening condition, or have died. In the UK, there are approximately 30,000 survivors of cancer diagnosed before the age of 15, and given that cancer is more common between the ages of 15-24 than in childhood and assuming cure rates are similar to those for children, there are probably over 30,000 survivors of cancer diagnosed when they were aged between 15-24.

Dr Nichols will explain that cancer patients face a double whammy: "There are two aspects: the burden of the disease and the burden of treatment. Each makes a long-term contribution to the patient's quality of life."

Problems for cancer survivors include: the increased risk of a second cancer arising either from the first cancer or from its treatment, infertility caused by chemotherapy and radiotherapy, hypertension, kidney problems, the metabolic syndrome (a collection of disorders such as obesity, high cholesterol levels, high blood pressure and insulin resistance) and hormonal disorders. Survivors of testicular cancer may have life-long problems with low sperm counts, low testosterone levels and poor semen quality. Patients who have survived cancer as children, teenagers or young adults often have psychosocial problems as well.

"We are beginning to learn more about the psychosocial consequences such as body image, employment and sexual health," says Dr Nichols. "There's a higher incidence of lower performance in life generally among cancer survivors. They have undergone a big life disruption at a formative time in their lives. There needs to be recognition of this so that we can try to identify problems and risks early on and be pre-emptive in our use of psychosocial interventions and use of medications."

Traditionally, paediatricians have tended to drive initiatives on caring for cancer survivors because they recognised the problem some time ago. In the USA, the challenge is being met by the establishment of Adolescent and Young Adult Clinics and Specialised Survivorship Clinics under the auspices of the National Cancer Institute. In the UK, the government's recently published Cancer Reform Strategy announced the setting up of a new National Cancer Survivorship Initiative to consider a range of approaches to caring for cancer survivors.

Simon Davies, chief executive of Teenage Cancer Trust, says: "We know that this is a major issue that affects a lot of our patients and is increasingly going up the national agenda. I have just been invited to join the National Health Improvement Agency's working group on improving services to survivors of childhood cancers. I am also a member of the National Cancer Research Institute's Teenage and Young Adult Clinical Studies Development Group. One of their three strands of work is survivorship led by Professor Mike Hawkins."

Speaking before the conference started, Prof Mike Hawkins, director of the Centre for Childhood Cancer Survivor Studies at the University of Birmingham (UK) agrees that survivorship following cancer in childhood, teenage or young adult years is becoming an increasingly important area in the UK and it has been highlighted by the cancer czar, Professor Mike Richards. Prof Hawkins and his colleagues plan to follow-up approximately 25,000 survivors of cancer diagnosed between the ages of 15-24 between 1970-2000 in order to discover the specific problems this age group face.

He identifies three key areas where there need to be improvements:

  1. the establishment of standardised guidelines for following up TYA cancer survivors;

  2. extending the evidence base for guidelines on long-term follow-up;

  3. providing every survivor with a "patient passport" on their discharge from hospital, which would contain a summary of all their treatments and the implications for any future medical treatments.

Some of these things are happening already, but in a fragmented way, with some guidelines in existence and some centres issuing patient passports. But Prof Hawkins believes it needs to happen in a much more organised and standardised way, and, at present, there is a big gap in knowledge about the 15-24-year-old age group.

"For teenagers and young adults we really need to extend the evidence base. There's still a huge area of ignorance in relation to the consequences of treatment in the late teenage and young adult years. We hope to address this through the NCRI group that I chair.

"In the interim, we have got to use what we know from survivors of childhood cancers. However, we are much more ahead of the game for children up to the age of 15 than we are for the generality of cancer survivors," he concludes.
-end-
Note:

See the press release on Dan Savage for an account of what it is like to be a cancer survivor.

Teenage Cancer Trust

Related Cancer Articles from Brightsurf:

New blood cancer treatment works by selectively interfering with cancer cell signalling
University of Alberta scientists have identified the mechanism of action behind a new type of precision cancer drug for blood cancers that is set for human trials, according to research published in Nature Communications.

UCI researchers uncover cancer cell vulnerabilities; may lead to better cancer therapies
A new University of California, Irvine-led study reveals a protein responsible for genetic changes resulting in a variety of cancers, may also be the key to more effective, targeted cancer therapy.

Breast cancer treatment costs highest among young women with metastic cancer
In a fight for their lives, young women, age 18-44, spend double the amount of older women to survive metastatic breast cancer, according to a large statewide study by the University of North Carolina at Chapel Hill.

Cancer mortality continues steady decline, driven by progress against lung cancer
The cancer death rate declined by 29% from 1991 to 2017, including a 2.2% drop from 2016 to 2017, the largest single-year drop in cancer mortality ever reported.

Stress in cervical cancer patients associated with higher risk of cancer-specific mortality
Psychological stress was associated with a higher risk of cancer-specific mortality in women diagnosed with cervical cancer.

Cancer-sniffing dogs 97% accurate in identifying lung cancer, according to study in JAOA
The next step will be to further fractionate the samples based on chemical and physical properties, presenting them back to the dogs until the specific biomarkers for each cancer are identified.

Moffitt Cancer Center researchers identify one way T cell function may fail in cancer
Moffitt Cancer Center researchers have discovered a mechanism by which one type of immune cell, CD8+ T cells, can become dysfunctional, impeding its ability to seek and kill cancer cells.

More cancer survivors, fewer cancer specialists point to challenge in meeting care needs
An aging population, a growing number of cancer survivors, and a projected shortage of cancer care providers will result in a challenge in delivering the care for cancer survivors in the United States if systemic changes are not made.

New cancer vaccine platform a potential tool for efficacious targeted cancer therapy
Researchers at the University of Helsinki have discovered a solution in the form of a cancer vaccine platform for improving the efficacy of oncolytic viruses used in cancer treatment.

American Cancer Society outlines blueprint for cancer control in the 21st century
The American Cancer Society is outlining its vision for cancer control in the decades ahead in a series of articles that forms the basis of a national cancer control plan.

Read More: Cancer News and Cancer Current Events
Brightsurf.com is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for sites to earn advertising fees by advertising and linking to Amazon.com.