HPV, Anal Cancer & Pre-Cancer
There are over a hundred different types of HumanPapilloma Virus (HPV), a number of which are passed on through sexual contact. The HPV virus is very common, 50 to 60% of the population carry at least one sub-type. Often the virus causes no harm and goes away without treatment. Some sub-types can cause warts (e.g. 6,11) and others potentially lead to anal cancer (e.g. 16, 18) and other types of pre-cancers; Anal Intraepithelial Neoplasia (AIN) in 5% of cases.
HPV Vaccine pilot for MSM (men who have sex with men) aged up to 45yo
The quadrivalent HPV vaccine (Gardasil) prevents these four HPV types, administered as a 3-dose series. From June 2016 an HPV Vaccine pilot has been rolled out for 40,000 MSM (Men who have Sex with Men). HPV Vaccination for men, has been something that has been campaigned for, for a long time. If you qualify, it is worth enquiring about at participating clinics. For men over 45yo, the threshold has been set, such that it is not expected to significantly impact you during your lifetime of course, you can still have the course of three injections via private treatment; Freedom Health, for instance would cost you £600.
Campaign for a gender neutral vaccination, and anger that the UK has not extended the HPV vaccination to adolescent boys
Adolescent girls aged 12 to 13 have been given the HPV vaccination (Gardasil) in the UK since 2008, this has already seen an 84% drop off for vaginal warts, which is very good news for less cases of cervical cancer in the future. There is a campaign for making the HPV vaccination a gender neutral vaccination with a similar reduction in number of future cases of anal cancer in men by vaccinating adolescent boys. However, in July 2017, the Department of Health issued a statement that HPV vaccination would not be extended to adolescent boys. This is despite other leading countries around the world; Australia, Austria, Bermuda, Brazil, Canada, Italy, New Zealand and the United States who have already started to vaccinate both boys and girls. There is considerable anger at this decision.
“As soon as the government announced the vaccine was for girls, all of us working in the field said, ‘What about the boys?’ The noise was immediately there and has been constantly there, and it has taken a very long time for anything to happen. That is odd when other countries are giving the vaccine to boys quite happily.” Dr Christian Jessen.
One of our members has been living with both HIV and the HumanPapilloma Virus (HPV). His HPV has not gone into remission and throughout seven years he has found it particularly tough emotionally and psychologically. Pre-cancerous abnormalities can include lumps, soreness or be indicated by bleeding around the bum, many clear themselves, but some require treatment with imiquimod cream (aka Aldara) and in more acute instances; laser ablation (laser surgery to remove abnormal cells).
He has shared his experience in a forthcoming issue of GMFA’s FS magazine. He has also responded by setting up a support network for other people living with HPV pre-cancers (see end of article).
GMFA: How did you first discover you had anal pre-cancer?
Paul: I was diagnosed HIV positive in 2005. Shortly after 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). The 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.
At first the pre-cancer 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.
Homerton Anal Neoplasia Service (HANS) is the country’s leading specialist clinic. Laser ablation destroys the disease with heat applied by microscopic laser – Dr.Nathan has even filmed one of my treatment sessions for use in his training programme for other surgeons.
GMFA: What is the worst part of living with anal pre-cancer for you?
Paul: 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! (I’ve also had two separate procedures under general anaesthetic to remove larger areas of growth an the outside of the anus.)
The recovery period, has at times been excruciatingly painful leaving me at screaming point when going to the toilet. After both the last two treatments last year an earlier this, 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 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 from 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 1 (low grade) through to 3 (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.
GMFA: Other than the treatment regime you’ve described, is there anything else that can be done to help slow down or combat the disease, such as lifestyle changes or even vaccination?
Paul: 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 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 5 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!
GMFA: What support is available for those of you who live with pre-cancer?
Paul: I’ve spoken with the HPV and Anal Cancer Foundation, who are only able to work with those who develop full-blown anal cancer (largely down to funding constraints). Similarly the distinction as a pre-cancer means it dies not fall into the usual remit of support charities such as McMillan Cancer Support.
There are a number of agencies who work specifically with HIV positive people, as well as specific peer support groups. However, there are no known specific services/groups providing targeted support for those living with HPV pre-cancers.
WhatsApp: 07908 059696 (ask to join hpvPS pre-cancer peer support service)
Facebook: hpv: PS – Pre-cancer Peer Support Service
(The Facebook group status is set as secret, so others can not see your membership – request a membership from Luap Reilloc)
Post: c/o 99 N17 9PL
Follow my WordPress blog – analprecancersupport