This week is Men’s Health Week 2021, a time to not only raise awareness of health conditions but also focus on treatment side effects, mental wellbeing and tackling the taboo.
Here, Jelena Sassmann, Medical Manager for Oncology, Ipsen UK shares with Pf how true collaboration with the patient community and national charities is helping to destigmatise the taboos surrounding the side effects of prostate cancer treatment and encourage men to talk openly.
Prostate cancer is the most commonly diagnosed cancer in men in the United Kingdom. 57,192 were men diagnosed in 2019 —equating to 1 man every 9 minutes. This alarming statistic has become a reality almost 10 years before previously predicted.
Although the incidence of prostate cancer in the UK has increased, survival in the UK has also tripled in the last 40 years. 78% of prostate cancer patients in England and Wales survive their cancer for 10 years or more. Patients diagnosed at an early stage, meaning their cancer is still confined to the prostate, have the highest survival rates.
Treatment options for prostate cancer include surgery, radiotherapy, hormone therapy and chemotherapy. These can have temporary or sometimes permanent side effects such as incontinence or erectile dysfunction.
Living for many years with cancer and potential treatment side effects can take a toll on men’s mental wellbeing and managing the side effects can be difficult to cope with.
Collaborating with charities
At Ipsen, we have been working with the prostate cancer community in the UK for over 30 years. We are always seeking new ways to connect with and help the prostate cancer community, beyond our medicines. During 2020, to better understand the community, we hosted a patient advocacy group advisory meeting to take a deep dive into the burden of the disease; the current issues and challenges in management; and what gaps in education or support patients are struggling with. There were many learnings from that meeting, but one of the most prominent themes that emerged was the lack of support with the psychological and emotional aspects of living with advanced prostate cancer, including the ability to talk openly about personal issues that needed addressing.
Working in collaboration with two national charities Prostate Cancer Research (PCR) and Tackle Prostate Cancer, we set out to destigmatise the taboos surrounding the side effects of prostate cancer treatment and encourage men to talk to
each other, as well as partners, family, friends and healthcare professionals, about the realities of living with advanced prostate cancer.
The first phase of the project was a nationwide survey to better understand the experiences faced by people living with this cancer, particularly in relation to the challenges patients face with treatment side effects. The research surveyed over 350 men with prostate cancer and found the following:
- 86% of men receiving treatment for prostate cancer experienced erectile dysfunction, and 79% suffered a loss of libido. However, only 1% of men surveyed felt most comfortable talking about side effects and mental health with their friends.
- Erectile dysfunction is one of the most common side effects, affecting 86% of men, followed by loss of libido (79%). Of those who experienced a loss of libido, almost half (42%) said their sex drive had “completely diminished” as a result.
- Almost three quarters (73%) of those surveyed suffer with incontinence, with 61% saying it affected their quality of life.
- These side effects can lead to a loss of confidence and feeling emasculated, and over a quarter of men (26%) said changes associated with their physicality have directly affected their mental health.
- Despite this, men feel uncomfortable talking about their side effects and mental health to the people they have the closest personal relationships to, with only 2% feeling most comfortable discussing the topic with family and even fewer (1%) with friends.
Key reasons for avoiding conversation included: feeling others would have a lack of understanding; peer pressure to appear to have a healthy sex life and/or health in general; and feeling as though the problem is ‘left for you to sort out yourself.’ However, 69% of men surveyed feel talking to other men with prostate cancer or having friends and family understand how they feel would help them discuss some of the ‘hard’ topics associated with prostate cancer treatment.
No fear of judgement
On the back of this research, we launched our campaign in late May, which is called ‘Let’s Talk About the Hard Things’. At the heart of the campaign is a series of powerful videos, featuring a diverse range of people affected by prostate cancer. Each video showcases a different pairing discussing their experiences of this cancer and the side effects of their treatment: a husband and wife talking about how they’ve dealt with prostate cancer and loss of libido as a couple; two men discussing the challenges of being black with prostate cancer; and two men who met at an LGBTQ+ prostate cancer patient support group who talk about erectile dysfunction and the realities of living with prostate cancer as gay men.
This campaign, which was only made possible through true collaboration with the patient community and national charities, has one clear goal: to ensure everyone feels able to speak about the effects of their treatment openly and without fear of judgement. The more men we reach, the more men who may be willing to open up to their friends, family or healthcare professionals and ultimately, get the support they need.
This article has been written and approved by Ipsen UK.
 Prostate Cancer UK. Prostate cancer becomes most commonly diagnosed cancer in UK, but research is at a standstill. Available here. Last accessed: May 2021.
 Date on File TRI-UK-004570
 Cancer Research UK. Prostate cancer statistics. Available here. Last accessed: May 2021.