Ben was still prepubertal at the age of 11 by the time his rare, bifocal (double) pituitary germ cell tumour was diagnosed. After a course of radiotherapy – but without any surgery or chemotherapy – his tumour was completely cured.
Importantly, Ben’s endocrine replacement therapy was carefully managed following radiotherapy. He received early injectable growth hormone, oral thyroid hormone and age-appropriate pubertal induction to support his growth, physical development and progression through adolescence in a timely way. This made a difference. He also requires replacement of cortisol and vasopressin (DDAVP), essential hormones that protect against life-threatening adrenal crises and salt and water imbalance, respectively. He manages a lifelong cocktail of up to thrice daily oral and injectable medications and must carry a medic-alert bracelet and be especially careful during periods of illness, surgery or medical stress. Without these hormone therapies, Ben would not have been able to grow, mature, have children or, ultimately, survive.
Historically, oncologists have been concerned about the potential impact of cranial radiotherapy on cognitive outcomes, including effects on IQ. However, Ben’s experience highlights an equally important principle championed by Success: achieving rapid tumour control and providing timely rehabilitation, endocrine care and long-term survivorship support can be just as important in determining an individual’s future function, independence and quality of life.
Today, Ben has gone on to become a lawyer and is passionate about advocating for young people who have experienced childhood brain tumours and their treatments. He regularly speaks at Success conferences about the importance of informed survivorship care, particularly around partnerships, fertility and access to specialist reproductive services.
Because Ben was prepubertal at diagnosis, sperm banking was not an option. The position of his pituitary tumour meant normal puberty and fertility messages were hindered, but could be replaced when the time came for wanting fertility potential restored. His case highlights the importance of sensitive, age-appropriate fertility discussions for boys approaching puberty and determining whether tumour position or chemotherapy may impair future fertility. Once he married, Ben explored and underwent specialist reproductive endocrine and fertility treatment at his own expense and the couple are now the happy parents of two naturally conceived daughters.
His experience has inspired him to campaign for equitable NHS fertility treatment for male as well as female pituitary tumour survivors. Ben has worked alongside Success to develop educational workshops focussed on fertility, relationships and reproductive health for older adolescents and young adults. Survivors of childhood brain tumours are less likely to form intimate relationships and may face additional barriers to family building than other cancer survivors. Through open discussion, education and practical support, Ben hopes to help ensure that future survivors are better informed, better supported and able to make choices about their futures with confidence.
