Supporting men with testicular cancer Patient Involvement Model Sue Brand Germ Cell CNS

Adjuvant Chemotherapy Metastatic Disease Chemotherapy/RT Surgery Active Surveillance Adjuvant Chemotherapy Metastatic Disease Chemotherapy/RT Surgery Metastatic Disease Complex Poor Prognosis Germ Cell CNS/Website/Buddies/TYA Youth Worker* Website: Get into your NEW PANTS It's in the Banter Germ Cell CNS During Treatment: Germ Cell CNS/Buddies/Consider psychologist with complex patients Living Well Treatment Clinic: OPD weekly Post treatment: Website: Get into your NEW PANTS & Holistic Needs Assessment Clinic Holistic Needs Assessment Survivorship Toolkit 1 day course If further support required patient can self-refer to the weekend self-development course / psychology If still struggling consider further HNA appointments NB: If patient is struggling with late effects, sexual function issues, extreme fatigue, depression and other complex issues consider specialist referral to psychologist, sexual counsellor, palliative care team or endocrinology.

Holistic Needs Clinic Nurse Led clinic using the Macmillan Concerns Check List. Issues most concerned about: Money & Work Education and grants Anxiety & fear of recurrence Difficulty making plans Guilt for being cured Partnerships Recovery time Support Groups Hobbies

T - Trim back the Alcohol and give up recreational drugs Get into your NEW PANTS N- Now What? E - Emotional Health W - Work and Education P - Physical Health A - Alter your Diet N - No to Smoking T - Trim back the Alcohol and give up recreational drugs S - Sex and relationships

It’s in the Banter – Support Activities

Survivorship Toolkit and Personal Development Course

Averages ST Course 2016/2017

What did you enjoy about the day? Meeting, sharing with others and discussing each other’s experience. Also, Michaels and Sue’s experience is great to ask questions etc… Meeting other men with similar and diverse experiences of testicular cancer Timeline and voicing my personal story with people who came from different experiences of cancer Seeing how other people can cope with that situation, getting some advises how to change my life. Meeting other people that have gone through the same as me, hearing their journey to where they are now Information, knowing other men with the same cancer as yourself. Not being alone. Finding out about what you can do also taking more control of your life and yourself Meeting other people and hearing about their experiences, good information as well Theory of managing and coping with stress. Meeting others in similar situations

What did you enjoy about the day? Diet and Exercise Sections Relaxed attitude. Talk on link between stress and well-being. Lunch wasn’t bad either! The chance to sit in a room with other blokes who have all been through the same thing and to stop and process it all. To take some time out and think about it all. Also taking some motivation to make a plan to change habits The 3 points about taking charge of your life – stress, exercise and eating. Sharing experience with others Great day very informative. an opportunity for some time out from everyday life to discuss with others Meeting others ad hearing about the facts of cancer Managing stress well

What did you enjoy about the day? The medical information - helpful it was by a nurse and not the internet Understanding more about cancer, the venue and getting to meet other cancer patients - sharing stories and make friends Really useful to talk with and share experiences with everyone. I would absolutely recommend it The excellent delivery of course and talking to other guys in the same situation The lifeline was a good opportunity to get into a bit more detail and know peoples experiences. Also liked the medical stuff Sharing from each other about their life Science Interactions with other in similar circumstances I enjoyed sharing the company with people similar to myself and gaining nutritional and fitness advice Some were worried why men had not turned up and wanted to help encourage them to come.

What did you not like about today? ?? it is a all round good experience Exercise sharing session – know your audience. Need to adapt to the peoples experience/habits/age etc… Need more physical exercise demonstrations Very quick, need more detail – good for overview Nothing disliked, but felt awkward with the sexual stuff There was nothing that I didn’t like

Testosterone Deficiency in Germ Cell Patients BHOC 2011 – 2016 Lara Gibbs ST5 Medical Oncology

Percentage of patients in each T level group (n = 426)

T according to initial chemotherapy

In the surveillance group: 11% reported symptoms of testosterone deficiency 18% received testosterone replacement 7% were referred to endocrinology Of patients treated with carboplatin: 26% reported symptoms of testosterone deficiency 23% received testosterone replacement 17% were referred to endocrinology Of patients treated with BEP or EP (or other chemotherapy): 19% reported symptoms of testosterone deficiency, 14% received testosterone replacement 9% were referred to endocrinology

Any Questions