Fertility information leaflets for childhood cancer patients and survivors

Cancer and its treatment have many side-effects, some of which may persister appear years after the treatment has finished. This is known as late effects. One such late effect is the effect on fertility i.e. the ability to have a child.

This issue is very relevant to parents and their children, but often does not figure prominently in the initial discussion a doctor has at the time of diagnosis. Information regarding effect on fertility may either not be imparted or get buried in a pile of other information related to cancer and its treatment. Cankids through their survivor group - Kidscan Konnect have taken the initiative of raising the awareness of this issue and produce information leaflets. It has been my pleasure to partner with KCK in this endeavour and bringing out these leaflets. Such information, which till now has been missing in Indian centres, is very welcome. Well done KCK!

First Annual Conference on Fertility Preservation in India

Fertility Preservation in Children with Cancer in India - A New Initiative to Address a Neglected Issue

The use of chemotherapy, radiotherapy and surgery in the treatment of children with cancer has implications for their future fertility. Guidelines exist in Europe and North America in regards to offering counselling and fertility preservation options to these patients when risk of loss of fertility is high. The scenario (prevalence, guidance, practice and utilisation) is unknown in India.

On 8th November 2013, a closed educational and brain-storming forum was held at Cankids India, New Delhi, with the presence of all stakeholders – patient survivors and their parents, parent support groups and representation from the largest childhood cancer NGO in India, and of health professionals (reproductive medicine specialist and pediatric oncologist). The aim was to educate, increase awareness and formulate an action plan to address the issue of fertility preservation in children with cancer in India.

An action plan was formulated which included

• Development of a risk-based algorithm for fertility preservation at diagnosis of a child with cancer
• Endorsement of algorithm by relevant organisations like Paediatric Haematology Oncology Chapter of Indian Academy of Paediatrics and by Indian Fertility Society
• Dissemination and advocacy for adoption of algorithm by centres treating childhood cancer across India 
• Commencement of monthly fertility clinic for childhood cancer survivors who have hitherto not been offered any counselling or service
• Development of pan India programs for fertility counselling and services for children with cancer
• Prospective collection of data from these patients so as to understand the current epidemiology