The Throat Cancer Foundation has launched a new, nationwide campaign aimed at tackling the stigma of people living with HPV-related throat cancer.
No More HPV Stigma will focus on bringing together medical professionals and people who have lived with Human Papillomavirus (HPV) linked head and neck cancers to facilitate an open dialogue about changes that could make a big difference in the education surrounding HPV and the experiences of throat cancer patients.
The Throat Cancer Foundation is the only organisation to have provided nearly 12,000 information booklets to 300 cancer treatment centres for patients and medical professionals involved with the care of throat cancer patients throughout the UK on HPV and how medics should explain the virus to sufferers, loved ones and couples.
s part of the hard-hitting new campaign, which aims to prevent false assumptions and judgements around the virus, the Foundation is encouraging people living with throat cancer to speak out about the impact of stigma-based stereotypes.
To support the campaign, one father has opened his heart about some of the cruel stigma he has faced following his cancer diagnosis.
Paul Younger, 55, from Orpington, Kent, says he has faced small-minded assumptions from people that he has had HIV or had been promiscuous during his youth since he was diagnosed with the deadly illness just over two years ago.
The former NHS Procurement Manager is horrified at the lack of information he feels is available to both medics and patients in relation to the Human Papillomavirus and how it is carried.
He believes sensationalist media articles, such as Hollywood actor Michael Douglas’ infamous claims his HPV was caused by oral sex, is creating a stigma-based stereotype about the virus and even went as far as to say that HPV cancers are becoming falsely known as a ‘dirty’ cancer.
The Throat Cancer Foundation has launched their new campaign amid concerns that a lack of information is available publicly when it comes to education on HPV related head and neck cancers.
Speaking as part of the Throat Cancer Foundation’s new anti-stigma campaign, Paul says: “I’ve always had a short beard but when I was trimming it one morning, I noticed that a lymph on the left side, just under my jaw, had become extremely enlarged.
“I went to my GP around October 2017 and she was initially not at all alarmed, stating that this was very common in men, particularly after a cold. She did ask me if I’d had a cold which I hadn’t, but she still sent me for a precautionary test with an ENT surgeon. I subsequently had a biopsy and at Christmas 2017 I was called at work and they said the biopsy was clear.
“However, the lump was still there and my ENT consultant suggested a fine needle biopsy, which was a bit more invasive. This was done fairly quickly, within a week, and I was called back for the results on 15th January 2018, just over two years ago. Arriving at the clinic there were so many people waiting and, having the surname Younger, being at the bottom of the alphabet, I expected a long wait. I was called in first and was quickly diagnosed with throat cancer. The cancer had spread to the lymph and my ENT surgeon said that he needed to find the primary tumour, which he did a few minutes later, after inserting a scope up into my nose and down into my throat. What disappointed me was that another scope was inserted at my first appointment and nothing untoward was found.
“Initially my consultant asked me some subtle personal questions stating that, as I wasn’t a heaver smoker or drinker, the likelihood was that it was HPV and possibly related to something I did as a teenager. He mentioned that HPV cancer amongst the over 50s in Bromley was increasing with at least 5 new cases every week. As you can imagine I was a little taken aback after revealing that I had only been intimate with two women prior to my diagnosis, at the assumptions being made about how I had possibly contracted the virus.”
Comments like these are rare and on the whole, those involved with the care of throat cancer patients are completely professional in diagnosing patients.
In hindsight, Paul said he fully realises that there is no easy way of giving a patient a cancer diagnosis and on a positive note his surgeon mentioned that there was a high chance of a curative solution with a success rate of 90 per cent.
Many sufferers of HPV-related cancers have contacted the Throat Cancer Foundation after they faced accusations of having affairs by long-term partners as it was never explained to them how HPV is carried and passed.
The Human Papillomavirus (HPV) can lie inactive in the body for 30 years or more, and has been commonly found among men and women in their 50s. It can also manifest itself in illnesses such as shingles, and even verrucas.
New research has revealed two out of five women (39%) would be worried what people thought of them if they were told they had HPV. Worryingly 41.7% would worry their partner had been unfaithful.
Paul believes these statistics should also be measured amongst men. Speaking of his first experience of bias and stigma from having a HPV-related cancer, Paul, who now works at the House of Commons in London, said: “When the doctor asked about my teenage years, probing the possibility of promiscuity, I told him that when I was 16 I hadn’t even had sex. I was a little unhappy of possibly being judged. Growing up on a council estate we all shared drinks from the same cans and yes some of us kissed the same girls but there was no understanding of the risk of HPV in those days.
“My surgeon was extremely confident that my cancer was the result of HPV and I was taken into hospital within three days for him to conduct a proper biopsy under general anaesthetic. At a follow up visit I was told that it was definitely HPV and that I was a ‘lucky boy’ as the diagnosis had been fairly swift. Despite this I was still unhappy at being initially misdiagnosed with the consequential delay in treatment. When you are diagnosed you just want the treatment to start quickly to improve your chances.
“When told how fortunate I was I said to him, ‘Oh really, I’ve been married for 28 years, I’ve never been out of work, I’m approaching retirement, and I’ve only ever had one partner, other than my wife, and you’re calling me a lucky boy!’”
Paul believes media articles surrounding celebrities like Hollywood actor Michael Douglas, who infamously claimed his HPV was caused by oral sex, has given people the wrong impression about sufferers who carry the virus.
The dad-of-two said: “Unfortunately Michael Douglas has damaged everybody that suffers from it because he publicly stated that his HPV was caused by the thousands of women that he’d slept with.
“For me, I hadn’t slept around as a youngster and had been in a long-term marriage. I was even working as a Lay Minister for the Church of England supporting the terminally sick and to be struck down by something that I couldn’t possibly have prevented was a bitter pill to swallow. When the surgeon intimated that this illness could have been due to promiscuity in my teens, it infuriated me because he didn’t know anything really about me. Perhaps he was just looking for a root cause but for me it felt harsh.
“I know that there’s no easy way to convey such a horrible message but I do feel that medical professionals need to be less judgemental and be more sensitive when communicating a diagnosis. Perhaps they need a bit more training in how HPV is contracted and how to explain it better to their patients. At an early meeting during treatment at Guys I asked a clinical nurse specialist for further information on HPV, which she faithfully promised to provide, and which to this day has not been forthcoming. The day after diagnosis, in a broken state, I called the McMillan Helpline and despite some comforting reassurance, the lady I spoke to confessed to having no knowledge on HPV and she didn’t know where to direct me to.”
Shortly after his diagnosis, Paul’s throat cancer was treated with 30 gruelling radiotherapy sessions over six weeks and two chemotherapy sessions.
Although he has since been given the all clear, Paul lives with the common side effects of post throat cancer treatment, such as problems with his teeth, permanent dry mouth, a sensitive tongue which flares up periodically, trouble eating and drinking certain foods, and constant issues inside his mouth. At the moment he has been waiting nearly three months for dental treatment at Guys due to the lifelong risk of osteoradionecrosis of the jaw. This is also a worry for all HPV patients who subsequently have radiotherapy to the lower jaw.
“I’m still suffering today,” Paul admits. “I’m having real problems with my teeth. The side effects from treatment weren’t really clarified to me when I found out I had throat cancer. I still have very little saliva in my mouth and rely daily on sprays and gels but I’m obviously grateful and extremely fortunate to be alive.”
After being told his cancer was gone in July 2018, Paul found himself feeling anger in relation to his HPV diagnosis as he constantly went on the search for answers.
He began to feel frustrated and resentful due to a distinct lack of information and explanation of what may have caused his HPV diagnosis.
“Of course the anger kicked in. I hated and still hate telling people that I’ve had HPV throat cancer, because as soon as I tell them people hear HIV and ask if I’ve had aids,” Paul said.
“I’ve even started phrasing how I speak to people differently. I now say to them, ‘I have had Human Papillomaviral cancer,’ which conveys a completely different message.
“You start questioning who you’ve been with and who your partners have been with. I’ve been parted from my wife for over three years now and I’ve met someone else who I’m still with and at times the tension was unbearable. As soon as you start having a new relationship there’s an element of wanting answers and your natural inclination is to probe everyone that you’ve had a close relationship with.
“I’d been married for 28 years and had been in a completely faithful relationship, but even then I started to question who my partner was and who she had been intimate with. It was completely irrational and unreasonable but unfortunately the anger fuels a need for answers.
“An HPV cancer diagnosis affects the relationship that you’re in as well as other relationships you’ve had as well as those your partners have had. I had to talk with both of my grown up children knowing full well that, as adults, they would have both read about the virus and possibly formed their own opinions about their dad.”
As Paul had separated from his wife before he discovered he had throat cancer, he believed that after his treatment he would have to remain celibate and be without another partner for the rest of his life. One of his main fears surrounding this was the worry that he would still be carrying HPV, or that he would be more susceptible to catching the virus from a new partner. He didn’t want to put anybody else at risk either.
His fears were only alleviated after the Throat Cancer Foundation put Paul in touch with Professor Margaret Stanley OBE, one of the Foundation’s clinical advisory team experts based at the University of Oxford, who reassured him that he could continue on as normal and would be able to have a loving, healthy relationship with a new partner.
“That was a green light for me to revert back into a normal relationship,” said Paul. “I didn’t really understand if I’d be able to start a normal relationship again. Having endured horrendous treatment, described by one consultant as “medieval” I didn’t want to put myself or anyone else at risk of infection. I started to Google, ‘Should I ask my partner to get tested for HPV?’ or ‘Have I still got HPV?’ Even now I still don’t know the answers to these questions.
“One morning I got an email out the blue from a lady from America. She informed me that she was a spinster who had never had sex with anybody, yet still had contracted an HPV-related throat cancer. She had no idea where she’d got it from. That was also a profound turning point for me but honestly I still feel, even today, that I’ve had a “dirty cancer.”
“I’ve even heard stories that you can catch HPV from a door handle. Like anybody you just want answers on how to minimise a reoccurrence as well as how to prevent others as well.
“Your natural inclination when you’ve been diagnosed with cancer, is a desperate need to start the treatment right away but there are a multitude of tests to be completed before you can get going with radiotherapy and chemotherapy. On the internet I read horror stories on cancer sites that it will always come back and it will still kill you.”
Paul, whose current partner had breast cancer with a mastectomy, still finds himself becoming angered about the false assumptions people make about those who have had HPV-related throat cancer, including ideas such as ‘they must have been promiscuous,’ or that it’s the same thing as HIV.
He believes there should also be educational training in schools and universities on the subject of HPV and how it can be transmitted, as well as information on how to tackle the stigma. He said, “In this day and age with an internet dating people no idea of the risks they’re exposing themselves to.” As soon as you say to someone that you’ve had an HPV cancer, people automatically say, ‘Oh you’ve had HIV?’ They hear something completely different and that’s why he’s changed the way he conveys his illness to people.
“It still seems to me that so little is known about HPV and assumptions have been made which make you feel as if it’s a ‘dirty’ cancer. At the end of the day it’s people just jumping to conclusions after reading Michael Douglas’s story. Stigma has to be separated from facts.
“The harsh reality is that 80 per cent of my generation in their 50s have either had HPV, and some continue to carry it, as it lies dormant for decades. I still don’t really understand whether HPV left my system after I had the radiotherapy. I also don’t know whether I still have it, if it’s still dormant or if I’m still at risk. It’s a constant torment. I still wonder exactly what did spark the virus off to give me throat cancer. I’m not a heavy drinker, smoker and I certainly didn’t sleep around.
“I know a guy who I have just supported through treatment. When I went round to see him, when he was first diagnosed, I could sense what his wife was thinking. They have been married for around 30 years and as she was stoney faced I asked her. She confessed to naturally concluding that her husband had possibly had an affair which of course he hadn’t.
“I offered reassurance that he could have innocently kissed or touched a girl when he was 16, before he’d met her, and the virus had laid dormant since then. I told her that something had sparked the cells into becoming cancerous but nobody would be able to answer why.
“Anyone that contracts HPV cancer immediately looks to blame someone or something but its’ wasted energy as it’s likely that you will never found out where it came from in the first place.”
Paul hopes in the future that testing will be made available for boys to allow medics to detect whether they have the HPV virus or not. As we now know it usually leaves the body within two years but some immune systems don’t shake it off.
Evidence now shows that the HPV vaccine helps protect both boys and girls from HPV-related cancers including throat cancer.
Paul has also backed the Throat Cancer Foundation’s recent campaigns for a catch-up programme to be made available to boys, and for adults over the age of 45 to be inoculated if they believe they may be at risk.
“Girls get screened and tested with regular smears, but boys don’t. If a smear shows abnormal cells girls get a routine Pap test which can then detect the presence of the HPV virus but boys get nothing,” Paul continued.
“I had to sit my son and my daughter down and tell them to be careful. I even offered to pay for my son to be vaccinated.
“Today I continue to live in fear and to minimise this I’ve even tried to get major high street pharmacists to inoculate me with Gardasil, at my own personal cost, but they refuse to do so as I’m too old apparently for the drug to be effective. I’m not sure what that’s based on to be honest.
“There should definitely be some sort of information sheet in schools that informs both boys and girls how they can catch HPV as well and education on how those risks can be minimised. There is more promiscuity now than ever, with all the dating apps youngsters use, and hence there now needs to be a campaign like this to make people aware of what they’re doing.”