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

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.

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Last reviewed: By John M. Grohol, Psy.D. on 21 Feb 2009
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