The human papillomavirus (HPV) and the cancers it causes can devastate people’s lives.
People who have survived an HPV-related cancer talked to us about what they went through. They explain how they were diagnosed with cancer and their emotions and experiences as they dealt with that, and then started treatment. They talk about the impact on their lives and on those around them, and whether they have been able to get back to a ‘normal’ life.
They also talk to us about their thoughts on HPV itself and the availability of vaccination, and whether they would like to see universal vaccination for men and women. Finally, they give us their message to patients and policymakers so that others can learn from their stories.
We are very grateful to all those who have trusted us with very personal information about their lives. Unsurprisingly, some have chosen to remain anonymous.
Find out more below.
Steve Bergman is an actor from England, the UK. He was diagnosed with human papillomavirus (HPV)-related throat cancer five years ago. He had to undergo an aggressive treatment schedule, including surgery, chemotherapy and radiotherapy, that left him physically and emotional traumatised.
Here he talks about the numbness he experienced after receiving his diagnosis and the terrifying and ongoing impact of his treatment, and how that led him into campaigning and advocacy.
Steve then discusses how he has been judged for having an HPV-related cancer and why he believes that HPV vaccination should be available universally, to both girls and boys.
Christina Fagerstrom, from Vantaa, Finland, was diagnosed with aggressive human papillomavirus (HPV)-related cervical cancer in her early thirties.
Although she received support from her family and friends and her workplace, she could not escape the emotional impact of the disease, especially the realisation that it could have implications for her desire to have children and give birth naturally.
She stresses the importance of maintaining balance in life, especially with something so negative as a cancer diagnosis. She also emphasises the need to learn from her and other’s stories and make sure that HPV vaccination and screening tests are available to all and, more importantly, taken up.
Laura Brennan was an extraordinary young woman. At the age of 25, she learned that her cervical cancer was terminal.
From then until her death at just 26 years of age, Laura, from Ennis, County Clare, Ireland, worked tirelessly as a campaigner for HPV vaccination.
Working closely with Ireland’s department of health, she urged young women to get vaccinated, saying in a promotional video: “I am the reality of an unvaccinated girl.”
Adding: “What kills me though is that all this could have been prevented.”
After levels of vaccine uptake had dropped to just 51% in June 2016, her efforts, including becoming an HPV vaccine advocate for the World Heath Organization in Europe, saw levels climb back up to 71% in the weeks before she passed away.
Following her death, a powerful and moving award-winning documentary charting the final months of her life was aired on Irish television, after which levels of HPV vaccination uptake rose further still, to 82%.
Here, we speak to her parents, Bernie and Larry Brennan about how Laura became involved in HPV vaccination advocacy, the key to the incredible success of her campaign, and how they are carrying on her important legacy.
Josef Mombers,* from Belgium, was diagnosed with human papillomavirus (HPV)-related cancer of the penis three years ago, when he was 57 years of age. It is an aggressive form of the disease that requires radical therapy and typically has a poor prognosis.
Here, he tells us his story, describing the impact the diagnosis had on him and his family, not only in terms of its management but also its psychological, physical, sexual, social, and professional impact.
He also gives us his thoughts on HPV vaccination and tells us why, even now, considers himself fortunate, and why cancer patients should always maintain hope that they can make it.
Rachel Parsons, from Coventry, the UK, spent six months with a painful ulcer in her mouth before she was finally diagnosed with oral cancer at the age of 37 years. Her surgery was successful but a year of complications and side effects nearly ruined her marriage.
She explains how her cancer was repeatedly missed by her dentist, and how she helped her five children understand that their mother would need treatment.
She also recounts the help her and her husband had to rebuild their relationship, and how they have dedicated themselves to breaking down the stigma around human papilloma virus (HPV)-related cancer and raising awareness over HPV vaccination.
Sagrario Ortega, from Spain, was diagnosed with human papillomavirus (HPV)-related mouth cancer in 2014.
Here, she movingly describes the effect of the diagnosis and its treatment, and her drive to maintain her positivity and courage. And yet the hardest part was to come when her cancer came back four years later.
She talks about the incredible support she received from the healthcare team and her family and friends, as well as the importance of taking care of oneself and living day-by-day. Finally, she tells us why she thinks policymakers should “do what is necessary” to make HPV vaccination available to all.
Jill Bourdais, an American living in Paris, was in her eighties when she was diagnosed with anal cancer. While she was successfully treated in France, her doctor never talked to her about the origins of her cancer, nor explained that most anal cancers are caused by human papillomavirus (HPV).
Here, she talks about her diagnosis, the impact of her radiotherapy and the how the dedicated support of her husband helped her through the difficult times. She also explains how it was only when she reached out the an anal cancer charity in the USA that she finally got the information she needed about her disease.
Hüsna Sarıca Çevik, MD, a Family Medicine Specialist in Ankara, Turkey, has often treated women whose lives have been blighted by human papillomavirus (HPV) and the diseases it can cause.
To examine the impact that the virus can have, she spoke to four of her patients, some of whom have had lucky escapes and been caught before they developed full-blown cancer.
They talked about how they have had to live with the consequences of HPV-related disease, not only in terms of the medical problems it causes but also the effect on how they and others see themselves.
And they were all united in their desire for HPV vaccination to become available as part of the national routine vaccination schedule.
Janusz Rudzinski was diagnosed with anal cancer after developing anal fistulas. Although he was mentally prepared for the news and has a no-nonsense approach to life, the side effects of the treatment took their toll.
Now he has been left with damaged nerves in his feet, which make walking long distances difficult. However, he has also learned to appreciate that, sometimes, sharing problems with healthcare professionals can help improve our daily lives.
Despite the vast majority of anal cancer cases being caused by infection with human papillomavirus (HPV), the possibility that his disease could be related has not been discussed with Janusz.
Valentina D’Arrigo, from Italy, was 39 years old when she was diagnosed with human papilloma virus (HPV)-related squamous cell carcinoma of the cervix. Her world fell apart with the diagnosis but she found the strength to carry on so that she could live for her three children.
Valentina tells how, although she could’t run during her treatment, she started with long walks with a friend, before joining the Pink Ambassadors. This group of fellow cancer patients meet to show, through running, the importance of a healthy lifestyle and prevention. And it is that, Valentina believes, that saved her in the end.