Truly informed consent must include talking about future fertility, warn experts

March 30, 2006

Talking about sex and fertility can be just as embarrassing for medical staff as for adolescent cancer patients, the 4th International Conference on Teenage and Young Adult Cancer Medicine heard today (Thursday 30 March).

However, Drs Allan Pacey and Adam Glaser warned the conference, organised by Teenage Cancer Trust, that if doctors failed to discuss the effect that the cancer or its treatment could have on their future fertility with their young patients, the patients would have to make vital choices about treatment without all the facts they really needed in order to reach a decision and give truly informed consent.

Dr Pacey, senior lecturer in andrology at the Academic Unit of Reproductive and Developmental Medicine, University of Sheffield, UK, said: "Young people face a double whammy when given a diagnosis of cancer: not only do they have to deal with the news that they have a potentially life-threatening illness, but also that it could affect their fertility in future years. Suddenly, they have to discuss and consider intimate matters, which are often highly embarrassing to them, at a time when they are at their most vulnerable - issues to do with sex, which they may never have discussed with another adult before, let alone with a relative stranger.

"It is a complex and highly emotive area. Both staff and young patients can find it very difficult to deal with fertility issues in the time-scale available prior to treatment."

Dr Glaser, consultant paediatric oncologist at the Department of Paediatric and Adolescent Oncology, St James's University Hospital, Leeds, UK, said that medical staff might feel just as embarrassed and awkward about raising the subject with their young patients especially when there was a need to start treatment urgently. However, in order to obtain truly informed consent for many cancer treatments, this subject must be openly addressed.

"In order for a young person to be able to give truly informed consent, then the information that medical staff give them must include advice about the possible effects of treatment on future fertility. It is vital that doctors discuss fertility with their young cancer patients and, if possible, offer them opportunities to preserve their future fertility."

He said that a survey of 271 cancer patients aged between 14 and 24 who had attended a TCT conference in 2004 revealed that only 34% believed they were given fertility counselling, and of those only 29% felt they had received it before treatment started, whilst 38% recalled receiving it during treatment and 33% after the treatment had finished.

"While these data are provisional and to date have not been fully analysed, they indicate that there is room for improvement in the provision of fertility counselling," said Dr Glaser.

Dr Pacey said: "As oncologists become better at curing cancers, the fertility of patients diagnosed in their childhood, adolescent or young adult years is becoming increasingly important.

"Advances in assisted reproductive technology in recent years mean that for post-pubertal males diagnosed with cancer, sperm banking is a relatively straightforward procedure with high success rates, both in supplying the sample and ensuring the patient can have their own children later in life Recent studies have shown that the majority of boys aged from 12 onwards were able to produce a semen sample that was good enough to be frozen.

"However, the same is not true for post-pubertal girls because techniques to freeze, and subsequently use, ovarian tissue (or harvested eggs) remain experimental. Similarly, for pre-pubertal young people (of either sex) there are still many technical milestones to overcome if reproductive tissue is to be successfully removed and stored prior to cancer treatment and successfully used in adulthood to overcome infertility.

"Advances in infertility treatments are a success story that offer real hope to cancer patients today, compared with what was available just ten years ago. An understanding of the fertility implications of cancer and its treatment, alongside advances in assisted reproductive technology, should enable the medical profession to improve the quality of care and support that we provide to teenage and young adult cancer patients."

The experts said that although issues of fertility should be discussed whenever possible with patients, there were a number of difficulties arising from the timing and nature of the discussions. "We urgently need to research a number of issues in addition to those already mentioned," said Dr Glaser.

"Factors to be considered include the patient's physical, mental and social maturity, their vulnerability associated with a diagnosis of a life-threatening disease, and the potential for long-term reproductive problems arising from cancer and its therapy to impact on their self-esteem, relationships and other social interactions. There are specific problems associated with sperm banking; for instance, consent forms that may be incomprehensible for adolescents and which raise the issue of what should happen to stored sperm if the patient should die - a frightening subject for any teenager to be confronted with.

"These are all highly emotive subjects that need to be handled with great sensitivity."

Professor Sophie Fosså, an oncologist who specialises in testicular cancer at the Norske Radium Hospital in Oslo, Norway, told the conference: "More than 90% of testicular cancer patients are cured now, and as many as 70% are successful in their attempts to father a child, most often without the use of previously frozen sperm."

The challenge now for doctors is to minimise long-term side-effects of the cancer and its treatment, she said. In addition to possible infertility, these side-effects included second cancers, cardiovascular disorders and damage to the ears caused by cancer treatments (ototoxicity).

"Overall, testicular cancer patients can be reassured that they can expect a post-treatment quality of life that is similar to age-matched men from the normal population, even though 20-39% will have slight to moderate long-term after-effects," she said.
-end-


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.