Patients are often unaware of how they can safeguard chances of having children and provision is haphazard, say experts

Girls and young women with cancer in the UK are not being given enough information about the options for safeguarding their chances of having children after treatment, fertility experts have said, while describing access to such technologies across the UK as “haphazard”.

“Cancers in young people are largely treatable with good long-term survival [but] one of the most common ill effects of cancer therapy is permanent infertility,” said Melanie Davies, a consultant gynaecologist at University College London Hospitals. “If you ask people who have had cancer who are young: ‘What is the thing that bothers you most?’, top of the list is infertility.”

While men’s fertility can be preserved through freezing sperm samples, for women the options are more complex, involving the freezing of eggs, embryos or even tissue from the ovaries – although the latter is less well established and brings a number of risks, including the possibility of re-implanting cancerous cells.

But experts have raised concerns that patients, and even oncologists, are often unaware of the options, adding that there are huge variations in the availability of the technologies, storage and funding methods around the country, with funding often being granted by commissioners on a case by case basis.

“There is a very sketchy provision – in some places it is quite well organised, in other places it is not,” said Richard Anderson, professor of clinical reproductive science at the University of Edinburgh, who with Davies has co-authored an editorial on the topic, published in the British Medical Journal.

“There is an urgent need to improve information for patients, education for oncologists, and equity of funding, to overcome the barriers to more widespread use of fertility preservation in the UK,” they write.

While guidelines from the National Institute for Health and Care Excellence (Nice) have been issued, provision of fertility preservation remains patchy, they say.

“The Nice recommendation is that women [with cancer] should be aware of this and should be offered oocyte or embryo preservation, including adolescent girls,” said Anderson. “But the issue is that that doesn’t seem to have been established around the country by any means as yet.”

While data on the proportion of women with cancer who undertake fertility preservation is lacking, Davies and Anderson say the need for action is borne out by a number of surveys, together with feedback from both patients and clinicians up and down the country. “Colleagues [are] finding it difficult to get money [and] difficult to provide an adequate and funded service,” said Anderson. According to research from the UK charity Breast Cancer Care, 88% of 176 women under the age of 45 who had breast cancer said they were not referred to a fertility specialist after being diagnosed.

Valerie Peddie, senior charge nurse and fertility specialist at the Aberdeen Centre for Reproductive Medicine, agreed with the criticism. “It is absolutely fair and it is 100% accurate,” she said. “[Having children] is just part of the natural life cycle and they may be denied having children in the future if they are not given the opportunity for discussion.”

It isn’t only cancer patients who need access to information and technologies for fertility preservation, Anderson points out, noting that certain drugs and procedures used to treat conditions ranging from rheumatoid arthritis to sickle cell disease can also affect the fertility of patients. Peddie said: “It is all about quality of life and being afforded the opportunity for discussion and being given sufficient and accurate information regarding the implications, long and short term consequences [on future fertility] of any medical treatments that they might require.”

Stuart Lavery, director of IVF Hammersmith and a consultant in gynaecology, reproductive medicine and surgery, was upbeat about the provision of fertility preservation to patients.

“Our experience is that the NHS has become a lot more responsive to this issue – and we have got so busy now that we have had to set up a dedicated clinic just to see these patients urgently and get them into the system quickly,” he said, adding that the NHS had also become more supportive in funding such procedures.

Despite the progress, Lavery admitted there was room for improvement. “I think what is happening is that the oncology teams are really just finding out what is available in their local areas, and that perhaps the relationships and the referral pathways, that patient pathway, in many places may not be as smooth as it could be.”

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