fighting male cancer - healthcare conferences uk
TRANSCRIPT
Supporting the Emotional and Mental Health Needs of People Living With and Beyond Cancer A Cancer Survivor’s Perspective
Rebecca Porta
Friday 5 July 2019
About male specific cancers
There are over 200 different types of cancer but only three male specific cancers:
• Over 47,000 men in the UK are diagnosed with prostate cancer every year. It is more common in men over the age of 50. The risk of developing prostate cancer is higher in black African and black Caribbean men and those with a family history of the disease. Prostate cancer is predicted to become the most common cancer by 2030.
• Over 2,400 men in the UK are diagnosed with testicular cancer every year. It commonly affects men between the ages of 15-45.
• Over 600 men in the UK are diagnosed with the rare penile cancer every year. It is more common in men over the age of 50.
About Orchid
Set up in 1996 Orchid is the UK’s leading charity dedicated to the three male specific cancers. Orchid exists to save men’s lives from prostate, testicular and penile cancer through a range of Support Services, education and awareness campaigns and a world class research programme.
The Support Services programme, introduced in 2011 includes:
• Male Cancer Information Nurse Specialists.• National Male Cancer Helpline 0808 802 0010 and email service.• Dedicated Prostate Cancer Information Service (Big Lottery - Reaching
Communities Programme grant).• Testicular Cancer Telephone Counselling Service.• A portfolio of publications and resources.• Community based Male Cancer Information Roadshows.• A dedicated penile cancer programme in Scotland.• Testicular cancer microsite “Your Privates” and Schools Resource Pack.• Peer-to-peer support and networking opportunities.
A "care plan" to help improve the quality of care of survivors as they live with and move beyond their cancer
Cancer survivor: what does he look like?
Survivors may encounter a range of issues as a result of the cancer itself and cancer treatments:
• Cancer may cause significant physical, sexual, psychosocial and spiritual effects.
• There can be a range of practical consequences, including loss of income, limitations on work, studies, general performance, socialising and a change in roles.
• Effects may pass relatively quickly (e.g. hair loss) or be long-term or permanent (e.g. infertility).
• Some effects may not arise for months or years after completion of treatment.
Male cancer: feedback (Orchid survey)
• 78% of men wanted information about treatment options.
• 92% of men wanted information about treatment side effects and care.
• 90% of men said getting information from a Nurse was important.
• 56% of men searched the internet for information which was not always helpful.
• 85% of men felt they wanted peer-to-peer support.
Testicular cancer: feedback (Orchid survey)
• Two thirds of men (63%) were left so anxious and depressed following their testicular cancer diagnosis that they found it hard to socialise.
• 86% of men said their confidence and performance at work suffered as a result of their diagnosis.
• Nearly 40% of men delayed discussing how they were feeling with their partner.
• 70% of men were worried about how their diagnosis would affect their relationship and sex life.
• 88% of men in London felt they were able to discuss their diagnosis and fears with their friends.
Penile cancer: feedback (Orchid survey)
• 88% of men had questions about practical issues e.g. urinating and underwear.
• 84% of men wanted to know more about treatments under development.
• 60% of men had concerns about talking to their employer.
• 82% of men wanted emotional and psychological support.
• 72% of men were concerned about their relationship and sex life.
• 79% of men had concerns about being able to discuss their cancer with their family and friends.
Prostate cancer: feedback (support group)
• Diagnosis seemed often by chance.
• Symptoms not recognised by HCPs until too late.
• Stigma around prostate cancer.
• Feeling too ‘macho’ to go to the doctor.
• Insufficient support after diagnosis.
• Too much, frightening information online.
• Information on risk factors.
• Understanding why we have a rectal examination (DRE)
• Cancer is a curse.
Common barriers: before and after cancer
• “Help seeking behaviours”. Men are often more reluctant to seek help compared to women. They may disregard symptoms and changes. They may be reluctant to take time off to seek help.
• Men are not “in the system”.
• Masculinity and stigma. Embarrassment and not being “manly”.
• Visibility. Men aren’t seen as role models in health or delivering care.
• Accessibility to services, information, resources and support.
• Knowledge of health and illness.
• Hard to reach communities.
Top survivorship issues for men affected by male cancer
1. Access to a CNS during and after treatment.
2. Being able to talk to other men who have been though a similar experience.
3. Being able to talk to a professional about the experience.
4. Partners – support and information.
Survivorship issues for men affected by male cancer
• Body image.
• Sexual function.
• Self esteem and being “manly”.
• Guilt and fear.
• Shared experience and tips - joining a “support” group.
• Talking to a partner, family, friends and colleagues.
• New relationships – what to say and when.
• Lifestyle: well being, diet, relaxation, mindfulness and physical activity.
• Access to counselling service – when, where, how and timing.
• Meeting men from similar backgrounds e.g. cultural and religious.
• Emotional support.
• Leaving the safety of the cancer care network.
• Work and financial advice.
• Campaigning – “getting others to talk about it and do something”.
“A man’s experience after suffering male cancer can
have as big an impact on him as having the condition, or undergoing the treatment course for the condition”
Survivorship issues to consider
• Age.
• Sexual function and the impact on relationships.
• Cultural.
• Ethnicity.
• Physical changes e.g. body image, functions, self esteem, confidence.
• Peer-to-peer support.
• Signposting to other national and local groups.
• Health and well being events.
• Lifestyle: diet, physical activity, relaxation.
• Resource materials.
• Counselling and / or emotional support.
• Partners.
• Work and financial advice.
“Each man is different and will have different needs
depending on a long list of factors”
What might “success” look like?
QUALITY CARE
• Better management of physical changes.
• Better management of emotional changes.
• Access to a range of treatments, research studies and clinical trials.
• Access to support e.g. CNS, dedicated groups, one-to-one or meetings.
• Access to quality information.
What might “success” look like?
RELATIONSHIPS
• Support for partners and loved ones.
• A healthy sexual relationship – finding an emotional and physical balance.
WELLBEING
• A better quality of life – feeling in control.
• A positive experience.
AWARENESS
• Better awareness of male specific cancers, their treatment and the outlook for the future.
