Each year in UK around 4,100 children and young people aged 0-24 are diagnosed with cancer, and 15 per cent of them will have a high risk of future fertility problems as a result of treatment.
Alongside advice developed by CLIC Sargent nurses and fertility experts, the new online Cancer and fertility resource features frank and inspiring video interviews with young cancer survivors who’ve faced fertility issues, and have been through sperm, egg and embryo freezing or had children via donor eggs and surrogacy.
The survivors also talk about the psychological impact of fertility issues and associated physical changes caused by some treatments for cancer, like going through early menopause - and the need for medical professionals to explain potential effects of treatment and the options open to young patients more clearly.
CLIC Sargent hopes that nurses and other medical professionals will refer young cancer patients who are struggling to understand or cope with this aspect of cancer treatment to the resource for further advice and information, and use it to start discussions about this aspect of cancer care with their patients.
Jeanette Hawkins, Nurse Lead at children and young people’s cancer support charity CLIC Sargent said: “With more young people surviving cancer than ever, they must be informed about potential late effects of treatment, like infertility, by those involved in their care so that they can plan for their future and get the right support.
“The young people CLIC Sargent supports told us that not enough information is being given to help them understand what fertility preservation options are open to them, the impact of early menopause or how to cope with the psychological impact of fertility issues.
“We hope the survivors sharing their stories in our new resource, alongside the expert advice developed by nurses and fertility experts, will inspire medical professionals to give greater thought to how they discuss the issue with their patients, and give hope to young cancer patients worried about fertility.”
Jeanette’s views are echoed by fertility specialist Valerie Peddie, who told the Royal College Nursing's International Centenary Conference in November that at times, future fertility issues are not taken into account when planning care.
"For so long, cancer treatment has focused on one thing - survival," she said.
"But while this will always be the priority for any cancer patient and those treating them, we have now progressed to a point where many patients have the time to explore their options and think about life after cancer.
"Deciding whether to have children is a central part of many lives, and no one should be denied this opportunity because they were unaware of their options.
"Teenage patients are unlikely to have even considered their future fertility or know it could be impacted by their cancer treatment, therefore it is essential that these issues are raised and discussed by health care staff.”
Byron Geldard, 21, from Huntingdon who was supported by CLIC Sargent after being diagnosed with testicular cancer aged 18, has been filmed for the resource about sperm banking.
He comments: “When the doctor told me I needed to do sperm banking I remember my initial response was shock, because I didn’t associate chemotherapy with fertility. It was embarrassing but I just tried to laugh away the awkwardness.
“The IVF clinic I attended wasn’t a part of the hospital, meaning when you got there none of the staff knew your situation or why you were even there! You are simply told to get on with it. As this is such a high pressure situation, and holds up your treatment, it begs the question of how many people have been unable to do this on account of feeling 'too awkward'?"
Katharine Dobb, 39, from Timperly was diagnosed with cancer aged 10, and was just 13 when doctors told her that she would ‘never be able to have children’. She shares the emotional impact this had on her, and how she and her husband Nisar are now the proud parents of twins conceived with a donor egg and carried by a surrogate.
She comments: “I’ve had a lot of late effects as a result of treatment, for example it weakened my heart. But by far the most devastating effect of treatment for me was the impact of it on my fertility.
“I started hormone replacement therapy when I was 12-years-old, and I was just 13 when I found out I couldn’t have children. At that point there was no internet, no CLIC Sargent, nobody to talk to about how I was feeling.
“I felt that people thought I should just be grateful to be alive, so I kept all my feelings to myself and it really affected my teenage years, and at university too. It was a big secret that I carried around on my own.
“The big part of my future that I assumed I would have had was taken away. I was worried about relationships, and thought nobody would ever want to be with me. I thought men wouldn’t see the point in getting serious with somebody who was infertile.
“At the beginning of 2010 I arranged to have an appointment with Professor Ledger, a fertility specialist at a late effects clinic in Sheffield. He spent an hour with me and my husband and said: ‘it’s not your fault you had cancer, you have a right to pursue your dream be a mum and I’m sure you’ll be wonderful at it.’
“To hear that when you’ve spent two decades thinking that you’re never going to be a mum is amazing.”
Daisy Turner 27, from Ipswich, diagnosed at 19, shares how she had to talk to her boyfriend Keith about freezing embryos early on in their relationship, and about coping with the psychological impact of going through early menopause.
She says: “When the doctor explained that the treatment could leave me unable to have children I needed to talk to Keith about it, and what we could do. But we had only been together for nine months! Not a conversation you expect to have at that stage in a relationship as a teenager!
“I started to broach the subject a bit awkwardly and he just said, “I know what you’re going to ask me.” We talked everything through. About all the possibilities, including adoption. We made peace with it and decided we’d be OK whatever happened.
“In the end, we chose to go through IVF to conserve embryos together - and I also had some eggs harvested and frozen separately – in case Keith and I were to split up. Not to put all my eggs in one basket as it were!”
CLIC Sargent is the UK’s leading cancer support charity for children, young people and their families. To view its new online information about cancer treatment and fertility, visit: www.clicsargent.org.uk/fertility