Words by Paul Collier | @analprecancer | Photo © GMFA

The human papilloma virus (HPV), of which there are over a hundred strains can, in some people cause either warts or pre-cancer (strains 16 and 18 are the worst).

Most sexually active people have, at some point evidence of HPV in their system, though are unaffected. In a very small proportion of people it causes problems (anal, cervical, penile, or throat pre-cancer/cancer). Living with HIV has been shown to increase the risk of acquiring anal pre-cancer for men who have unprotected sex with other men.

Being diagnosed

I was diagnosed HIV-positive in 2005. Shortly afterwards, I had a spate of anal warts which disappeared with treatment, only to return again in 2010 when my HIV consultant suspected anal pre-cancer (known in medical terms as neoplasia). At first the pre-cancer was detected on the outside edge and was removed with surgery under local anaesthetic. Through regular check-ups there was a suspicion it may have spread inside. Around that time I read about pioneering laser surgery by Dr Mayura Nathan working at Homerton Hospital; I was referred and have been under his care since then.

The worst part

It is not so much the laser ablation treatment itself that is the worst part, despite the fact that local anaesthetic is administered through injection – and you know how bad it is when a dentist injects in your mouth before a procedure! The recovery period has at times been excruciatingly painful leaving me at screaming point when going to the toilet. After the last two treatments, which were last year and earlier this year, I’ve needed oral morphine – one of the strongest pain relief medications available.

I’ve experienced side effects resulting from surgery, including two episodes of urinary retention (the nerve system in the groin region goes into shock) requiring emergency catheterisation for several days, and issues with incontinence when emptying my bowels, which now requires ongoing management including incontinence aids (pants and tampax-like butt plugs).

The very worst part of all for me is the constant ‘cat and mouse’ chase; it’s been prevalent for seven years and pretty much every year since 2011 I’ve had at least one treatment episode, sometimes two. In most cases, one, two or three treatments ablate the disease enough in individuals for it to be described as having gone into ‘remission’, after which regular check-ups are required to check that the disease remains this way. In some patients, like myself, the disease is stubborn and continues to develop. This wears me down and particularly affects me psychologically and emotionally.

Doctors prefer to describe early evidence of the disease as pre-cancer and to emphasise that it is not cancer, going on to categorise evidenced changes as grades one (low grade) through to three (high grade). From a patient’s perspective I find this distinction unhelpful – all cancers involve abnormal cell changes, and anal pre-cancer involves abnormal cell changes, and it has the potential to develop into cancer.

Changing my life

I have had the first of three injections to vaccinate against the disease – there is no evidence to suggest at this stage it will eradicate the pre-cancer, but at best it could slow down its progression.

A characteristic of the disease is its unpredictability from one patient to the next and there are some things that can’t be changed. For example, the fact that my CD4 count went as low as 250 may contribute to the aggression of the disease.

But there are things I can do. I am a bottom in sex and can avoid being infected with additional/different strains of HPV by having protected sex. In fact, I’ve been

sexually celebrate for around five years as a direct

consequence of being infected with anal pre-cancer, and only in recent months, through therapy, have I been able to deal with the psychological issues that prevented me from having sex – I’m now discovering the highs (and lows!) of social media apps, such as Grindr. As with cancer, smoking is discouraged – I’ve tackled my alcohol addiction and have been clean for fourteen months, and am not yet ready to give up the fags!

Finding support

I’m aware of a number of charities who work specifically with HIV-positive people across the UK, such as GMFA and the Terrence Higgins Trust (THT), as well as specific peer support groups working within their locality, such as the Gay Men’s Group (GMG) meeting weekly on Monday evenings in Central London for peer support. But there are no specific services/groups providing targeted support for those of us living with HPV pre-cancers.

I’ve spoken with David Winterflood, UK Director of the Anal Cancer Foundation, about their work with those who go on to develop anal cancer. Founded in the US by three siblings who lost their mother to the disease, the charity fills a gap in services by connecting people together through peer support.

Likewise, I perceive there is a need for support to those of us who live with anal pre-cancer - the distinction as a pre-cancer means it does not fall into the usual remit of cancer support charities. There may be a number of guys in a similar position to me, either living with pre-cancer or concerned about HPV.  I’m on a mission for change! Currently I’m looking to develop peer support via social media. I’ve been working on an identity for my project; it is hpv: PS. The PS is a play on the Latin word post-scriptum or afterthought. PS also stands for Pre-cancer Service and Peer Support. I’ve set up a forum linked to my profile on Blued and also on Thingbox. I’ve also set up a Facebook forum, one on Terrence Higgins Trust’s (THT) MyHIV website and a blog on Wordpress. I’ve got a dedicated phone number for a Whatsapp group.

I just need to get the word out now.

To find out more about HPV: PS Pre-cancer Peer Support Service - Connecting people with pre-cancer and HPV disease via social media: You can email Paul at: [email protected]

WhatsApp: 07908 059696 (ask to join hpvPS group).

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