The Way Forward-Projects and Resources

Animated guide to penile cancer treatment and investigation

This is a short animated video created for the European Association of Urology Patient Office and Advocacy Group. Funded by eUROGEN it has been developed by Orchid Nurse Rob Cornes with the help of consultant urologists Mr Ben Ayres, Mr Arie Parnham, Mr Oscar Brouwer and EAU Patient Office Senior Co-ordinator Ms Esther Robijn. The video provides and informative and honest overview of diagnosis and treatment to help educate patients and Health Care Professionals.

A Spanish version of the video has also been created as part of the project.

European Association of Urology (EAU) patient information on penile cancer

Orchid Nurse Rob Cornes has been helping update the information on the EAU website for penile and testicular cancer with the aim of providing easy to understand information for every part of the patient journey. Patient experience and testimony will be included where possible and patients will be able to submit their own advice which can be included in the relevant sections.

Contributors to the penile cancer section:

Rob Cornes-Orchid Male Cancer Information Nurse Specialist

Anne Elizabeth Daniels- Advanced Urology Nurse Practitioner (Waterford)

Mr John Osborne-Independent Patient Advocate

Mr Patrick Howard-Independent Patient Advocate

Manged by EAU Patient Office Senior Co-ordinator Ms Esther Robijn.

Ignore It (video)

Penile Cancer is rare. Each year approximately 36,000 men will be diagnosed globally. Its rarity means that many people will never have heard of it and this lack of awareness combined with the embarrassment and stigma of symptoms, can delay men seeking medical advice. A recent survey of 40 men from an online penile cancer support group suggested that 93% were not aware that the disease existed. Some research has also suggested that in some cases this delay in diagnosis may be as long as 12-months.

Curative treatment for penile cancer will almost always involve some form of surgery to the penis and the longer the delay in diagnosis the more extensive and life-changing this may be.

Raising awareness of the existence of penile cancer is difficult, it is not a subject that is discussed openly, and traditional educational approaches are not as effective as those used for other cancers, mainly due to the stigma associated with it.

Orchid strongly supports patient advocacy, and individual initiatives which may help improve awareness of penile cancer. In 2018 Richard Stamp was diagnosed with penile cancer. He had not been aware of its existence and the symptoms he had been experiencing were not identified as being cancerous. Following his diagnosis and treatment he has spoken openly about both the physical and psychological effects he has suffered.

Working with a group of performers and producers he helped produce a video called Ignore It, a quirky, unconventional approach to raising awareness of penile cancer.

The video has been updated for a European audience and its release has been funded by ERN eUROGEN in association with the European Association of Urology.

It may be unconventional, but to increase awareness of penile cancer we need to take a different approach.

Release date 20th September 2023

Delay It (video)

Due to its rarity, many health-care professionals will have little experience of penile cancer or its diagnosis. Combined with the modern pressures on health systems such as workload and time constraints, the fact that early symptoms of penile cancer may be very similar to benign conditions, men may receive multiple treatments for non-cancerous conditions or may be referred inappropriately to dermatologists or sexual health clinics for assessment delaying diagnosis.1,2,3,4 This is currently one of the biggest concerns within the penile cancer community.

A recent survey of the largest online penile cancer support group suggested that only 33% of men were diagnosed within a month of symptoms, with 25% waiting longer than 6-months.Nearly two-thirds (60%) experienced a delay in diagnosis due to inappropriate referral.5 Curative treatment for penile cancer will nearly always involve some form of surgery to the penis and the longer the delay in diagnosis the more extensive and life changing this will be.

Orchid strongly supports patient advocacy, and individual initiatives which may help improve the early diagnosis of penile cancer.

In 2018 Richard Stamp was diagnosed with penile cancer. He had not been aware of its existence and the symptoms he had been experiencing were not identified as being cancerous. Following his diagnosis and treatment he decided to share his experience in a one-man theatrical show and has subsequently spoken openly about both the physical and psychological effects he has suffered. He has supported Orchid for several years helping raise awareness of the disease.

Working with a group of performers and producers he has helped produce a video called Delay It, a quirky, unconventional, and poignant approach to providing an important message to any health care professional who is unsure of a condition which is affecting the penis. This is in keeping with The National Institute for Health and Care Excellence (UK) current recommendations for suspected penile cancer.

Consider a suspected cancer pathway referral (for an appointment within 2 weeks) for penile cancer in men with unexplained or persistent symptoms affecting the foreskin or glans.

This video has been produced by Mr Richard Stamp supported by Orchid and has been funded by ERN eUROGEN.

Release date TBA

  1. Lucky MA, Rogers B, Parr NJ Referrals into a dedicated British penile cancer centre and sources of possible delay. Sexually Transmitted Infections 2009; 85:527-530
  2. Skeppner E, Andersson SO, Johansson JE, Windahl T. Initial symptoms and delay in patients with penile carcinoma. Scand J Urol Nephrol. 2012 Oct;46(5):319-25
  3. Shabbir, M., Kayes, O. & Minhas, S. Challenges, and controversies in the management of penile cancer. Nat Rev Urol 11, 702–711 (2014).
  4. John A. O’Kelly, Eva Browne, Padraig Daly, John Keane, Nigam Shah, Christine Shilling, Ivor M. Cullen, Penile cancer in younger men—A more aggressive disease? Urologic Oncology: Seminars and Original Investigations, Volume 41, Issue 7,2023, Pages 329.e11-329.e15.
  5. Cornes R, Earle W. Current Unmet Needs in Penile Cancer: The Way Forward? Semin Oncol Nurs. 2022 Jun;38(3):151282

Projects 2023-2024

Orchid Four Nations Penile Cancer Project

This is an exciting 2-year nurse led project with the following goals.

  • To raise awareness of penile cancer throughout the UK by engaging the general public, primary care and community health professionals. This will involve the creation of awareness resources and guides.
  • To work with the UK penile cancer supranetworks, signposting to support services such as the Orchid National Male Cancer Helpline and Telephone Counselling Service. To develop relevant information for newly diagnosed patients and to educate allied Health Care Professionals (HCPs), about penile cancer and its physical and psychological side effects.
  • To encourage and organise regional peer support meetings for patients and HCPs.

Start date October 2023-further information to be posted.

Penile Cancer Perspective Videos

This is an ambitious project to record the penile cancer journey and related issues through the eyes of patients/advocates, partners and clinicians. Different aspects of the patient journey can be broken down into video segments which can then be used to illustrate the various physical and psychological issues experienced alongside written information and advice.

Status-early 2024

Orchid Penile Cancer Hub

The ultimate goal of The Way Forward. To create a comprehensive one stop online site which incorporates all of the resources and information which Orchid will be developing throughout 2023-2024. All the information that anyone affected by penile cancer needs, in one place.

TBA

If you would like to offer support or be involved in current or future projects please email robert.cornes@orchid-cancer.org.uk, or to comment on any of the above please use the form below.

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