History – National Germ Cell Group

Testicular Cancer nurse specialists, Paul Hutton (QEH, Birmingham) and Zoe O’Neill (Coventry) organised the first national meeting of Germ Cell nurses in 2012, to share ideas/network.  Following on from this Sue Brand, Germ Cell CNS (Bristol) organised the next meeting in 2014, together with charity and user groups.

During those years there has been much debate about how the group should develop and a steering group of Sue Brand, Zoe O’Neill, Paul Hutton, Catherine Pettersen (Manchester) and Wendy Ansell (London) was formed. 

The Germ Cell Forum became more formalised and they held their third national meeting in Birmingham in 2016. The steering group decided to ask the clinicians what they thought about having a wider group and 2018 was the first joint venture.

With the support of Professor Jonathan Joffe; Dr Sarah Stoneham; Dr Andy Protheroe and members of the NCRI Clinical Studies Group, the NGCG held their first conference on 23rd April 2018 in Bristol. 

National Germ Cell Group aims:

  • Provision of a national network for specialist clinicians, nurses and supporting professionals who treat patients with germ cell cancer.
  • Provision of education, training and identification of best practice for all professionals treating people with germ cell cancer
  • Promotion of excellence in care and treatment of people with germ cell cancer through identification and sharing of best practice
  • Promoting and supporting research and the development of more effective treatment and care
  • Advancing awareness of germ cell cancer in the medical professionals and the public
  • Collaborate with patient groups/forums within the field

TERMS OF REFERENCE

Membership

The National Germ Cell Group does not have a membership list, however, all clinicians treating germ cell cancer in the UK are welcomed as members of the National Germ Cell Group. All members of specialist Multi-disciplinary Teams (MDTs) in the NHS are regarded automatically as members, this includes both specialist and non-specialist surgical urologists and oncologists.

Those who have previously worked in the field of germ cell cancer and wish to stay in touch with, or in training and considering a career treating people with germ cell cancer, are also welcome.

If you are interested in being on the distribution list email us: admin@nationalgermcellgroup.org.uk

Germ Cell Cancer

Germ cells are mainly found in the testicle or ovary, although can arise in the retroperitoneum or mediastinum as extra-gonadal germ cell tumours.  Germ cell tumours can metastasise to the lungs, liver, bone and brain.

There are two main types:

  • Seminoma
  • Non-seminomatous germ cell cancer

It is the commonest cancer in young men aged 15 – 49 years in the UK, it is relatively rare with 2400 men diagnosed per year.  As a rare cancer in the UK, patients are treated in specialist centres/supra-network centres. There are 13 Supra-network MDT’s in the UK.

For most men testicular cancer is curable even when it has widely metastasised. There will be a small proportion of patients with poor prognosis who do not survive the disease. 

Treatment of Germ Cell tumours

Surgery (Orchidectomy) is usually the first treatment for male GCT.  Treatment will depend on the histology and staging of the tumour. Many patients who have Stage 1 disease may be offered a programme of active surveillance and not require additional treatment. Patients who present with or develop metastatic disease will require chemotherapy. 

The standard chemotherapy regime for metastatic germ cell tumour is Bleomycin, Etoposide and Cisplatin (BEP). Radiotherapy may be used in patients with seminoma when chemotherapy is not suitable, to the para-aortic node areas.

Should lymph node masses persist post chemotherapy, further surgery such as Retroperitoneal Lymph Node Dissection (RPLND) may be required.

Patient Issues

Testicular tumours often occur at a time when good health is taken for granted i.e. at a young age. Patients may, in addition to coping with the toxicities of chemotherapy, experience issues around sexuality, fertility, body image as well as practical issues of work, finance, insurance etc.

In addition, patients will be monitored for long term effects of chemotherapy including increased risk of cardiovascular toxicity (MI, CHD and stroke) pulmonary toxicity, renal toxicity, ototoxicity and testosterone deficiency syndrome.