Kamaljit is a Nurse Consultant in Gestational Trophoblastic Disease, an incredibly rare disease which has a profound impact on many women and their families. She has written this blog to raise awareness.
Kamaljit was recently nominated for the ‘Compassion Award’ by The Mariposa Trust. The trust is a leading support charity primarily working within the field of baby loss and bereavement. They recognise health professionals who make a difference in the lives of people who have experienced baby loss. Kamaljit was awarded ‘Special Recognition’ by the charity for the work she does.
Gestational Trophoblastic Disease
Gestational Trophoblastic Disease (GTD) is a rare condition that can develop during pregnancy where there is an abnormal overgrowth of all or part of the placenta. We do not know why this occurs, but we do know there is a problem right at the beginning during fertilisation, with either the maternal chromosomes being lost, or there being two sets of chromosomes from the father and one from the mother. The abnormal growth can either be benign, often referred to as a molar pregnancy, or become malignant. A malignant GTD is commonly called Gestational Trophoblastic Neoplasia (GTN). There are three main types of GTN – persistent molar pregnancy, choriocarcinoma and placental site trophoblastic tumour. All gestational trophoblastic growths release the pregnancy hormone human chorionic gonadotrophin (HCG). In most cases a molar pregnancy can be successfully treated by surgery. However, for a small number of patients, part of the mole remains and can grow and spread to other parts of the body.
There are 3 screening centres in the UK for monitoring patients with Gestational Trophoblastic Disease (Dundee, Sheffield and London). However only 2 are specialist treatment centres: The Sheffield Trophoblastic Disease Centre for North of England and North (Sheffield Trophoblastic Disease Centre) and Charing Cross Hospital in London for the rest of the UK. In the UK we register around 1,600 patients a year and approximately 150 patients will require chemotherapy treatment for a GTN diagnosis. The disease is largely curative; we have 100% success rate for our patients with a persistent molar pregnancy, and around 95% with a diagnosis of choriocarcinoma or placental site trophoblastic tumour.
Little is known about this rare disease and often many women and their families will not have heard of it. Women being monitored for GTD face a unique set of challenges associated with the loss of a pregnancy and the potential of a cancer diagnosis; it can be utterly devastating for many women who will have had a much-wanted pregnancy, to then be told they have this rare disease which most of their friends and families have not heard of. In fact, many health professionals have little to no knowledge on the disease, leaving patients feeling confused and isolated. A new pregnancy should be a joyous occasion filled with hope and excitement but for these women it turns into a traumatic and challenging time, with fertility delays and the uncertainty of what the future holds. Having a specialised centre for GTD plays a fundamental role in ensuring these patients are well supported throughout their journey, to improve the care and treatments given to patients.
Patients are always at the heart of what we do and to understand the challenges these women and their families face is why we thrive towards providing the support and care that goes above and beyond the standard practice. The Sheffield GTD Nursing team have also been instrumental in setting up nursing guidelines to drive forward a patient focused holistic model of care for their GTD patients. To support patients with optimal psychosocial care, centres need to be working towards achieving best practice requirements to offer their patients a gold standard of care. The aim is to ultimately provide patients with the best possible experience and to continue to improve health outcomes which will benefit patients and their families (Singh et al 2023).
Singh, K., Rollins, S. and Ireson, J. (2023) GTD Best Practice Nursing Guidelines. Gynecologic and Obstetric Investigation. Pp. 1-7.