Why no PHE acknowledgement of the epidemic of HPV induced HNCs, and introduction of a vaccination programme

Hello

my first time on here for some years.  I had a very similar experience, had a smear about 25 years ago that came back with "irregularities" and then they did another few tests and didnt pursue.  in 2010 I had HPV + SCC tonsil.  I was successfully treated with chemo radiation (65 grays over 6 weeks)  and after had neck dissection of Right hand side.  unfortunately I have been diagnosed this year with SCC in the parapharyngeal space,  the GPs really let me down and did nothing quickly and by July there was some submucosal spread behind the nose.   Surgery was not possible as it was right next to Carotid artery and extending up into base of skull.   specialist was not sure if this was a new primary or a recurrence as it was also HPV+  and nasopharyngeal SCC is rare in this country.  I am not a smoker.

my only hope was to do more radiation and this was done in August and september (a further 65 grays) ./   there were some areas of mouth where RT has been "double" life time ie cross over areas that received RT both 2010 and this year.   as a result the effects of RT have been very severe.  RT ended mid September and within 6 weeks most oral mucositis was healed.  however, I have been left with recurring blisters, tiny blisters which last a few hours , filled with saliva retained, they are often painful and erupt to leave shallow ulcerated mucosa.  nob ody has yet managed to make an accurate diagnosis of what exactly is happening but suspect it is salivary damage.   I wonder  how can this be treated ?  what help would hyperbaric oxygen offer ?    i am doing the obvious things as part of regular routine such as saline rinsing, nasal irrigation with Neil Med sachets, Caphosol rinsing, and use of gels and sprays which are available for treatment of xerostomia.   Needless to say I am terrified now.  my understanding is that this is a virus which many people of my age (mid 50s) have and dont have any symptoms at all.  In just some unfortunate people, it has a capacity to bring on SCC either head and neck, or indeed of the cervix or anus.   it is terrifying to think that we carry it in our body and hope and pray it doesnt present as a tumour again.    I have my post treatment PET scan next Friday and am getting very anxious about it now.  I got used to this first time around, but this second time is even harder to deal with.

I would be very keen to hear if anybody has experienced these strange clear blisters in the mouth, (not ulcers, which are common after RT and heal quite soon in the following weeks.  the blisters can be painless but some are harder and painful and leave red irritated mucosa after they erupt.  mnay thanks Suzy

Hi Nicki,

There are two things that you have said in this conversation that have caught my eye, and set me off researching because they contradicted what I had read or been told.

The first is your quote "Apparently with some people the virus is lodged in the body...a bit like the chicken pox virus, and they are all herpes types".  HPV is NOT the same virus as herpes - HPV stands for Human Papilloma Virus.  One strain of herpes has similar initials (HSV), but these stand for Herpes Simplex Virus.

The second is the wider discussion about whether or not sexual promiscuity is the only way to acquire HPV.  According to the Macmillan website, and others of similar pedigree, HPV is acquired by skin contact, and can even be passed from mother to baby during childbirth.  It is most easily passed on by sexual contact, but that can be in a chain of one person to the next, not necessarily from one wildly promiscuous person to the next. 

When I was having my treatment, one of my fellow patients was a lady of 63 who had lost her husband two years previously.  He was her only sexual partner, and she was very distressed at the implication that he must have been unfaithful to her at some point in order for her to have contracted this virus.  I think there is a big difference between stating that something is most likely to have been caused in a particular way, and stating that it can only have been caused in a particular way.

Having HPV does not automatically imply that one or both partners in a relationship have had multiple partners in the past, and there is no real agreement about whether oral sex is the only way to have the virus lodge in the oropharynx (mouth and throat) area.  As with all viruses, once they are in the system then they are free to travel anywhere around the body, and as there are multiple places that contain the type of tissue that seems to be most affected, it would seem just as reasonable for the cancer to occur relatively randomly in one of those.

Josie

Hi Suzy,

I get these too, and despite multiple attempts to get a consultant to look at them, the lead time between phoning for an appointment and actually seeing someone invariably means that they have cleared up by the time of the appointment.  The best explanation anyone has given me yet is the spectacularly vague "radiation damage", which is undoubtedly true but doesn't explain anything.

I finished treatment for tonsil cancer in July 2013, and they didn't happen for at least a couple of years after that.  I was very worried the first few times, but they kept coming and going and my checks kept showing me to be clear of anything abnormal, so I hardly notice them any more.  They still appear, and they still hurt, but the difference is that they don't worry me any more.

A salt water rinse around the mouth helps speed up the healing, if that's any help.

Josie

Hello Josie

Thank you for that info...obviously I have been wrongly informed...I need to check my facts again. It is horrible to think the virus is in there and could surface anywhere again...A good reason to keep the immune system as healthy and as strong as possible.

Hi Salar1,

My husband was diagnosed with HPV left tonsil cancer back in Jan 2016. Incidentally he's doing really well.

Our daughter was vaccinated against HPV at 13 years old, her year was the first to have this vaccination, this was a number of years ago now. Up until Jan 2016, we hadn't given it another thought and only at the time she was given the vaccination, we thought it was only to do with cervical cancer.   That was all we were told. We never new that that boys could catch HPV. It was only when my husband was diagnosed that the team told us about HPV and how it presents itself, mainly in me as head and neck cancer and women as cervical cancer.

We were distraught to find out that the hospital where my husband is under, told us they diagnose and treat 300 new patients every month for head and neck cancer, proportionately HPV cancer patients were the highest % of the 300 diagnosis.  We were shocked! How can boys not be inoculated as well? Why are boys not inoculated? Simple truth, its cost. Boys can be inoculated as well as girls prior to sexual activity but you have to take them to the doctors to be inoculated, you can insist.

We asked that our son was inoculated when we found out my husband had HPV cancer. The Oncology team told us that it would be too late for him due to the age he was. HPV can be contacted through simply skin to skin, this is what we were told.

I'm sure that many others will have a more scientific response to make to this, it would be interesting to know more.

Best wishes

Sarah 

I am glad this subject is being discussed, I sort of touched on it in another post a few weeks ago but because of how I wrote it, I got the feeling I was being harsh.

My husband was diagnosed in October 2015 with SCC with HPV +ve, it was shown on scan to be tonsil but on biopsy after removal it wasn't in there so they only had the lymph node to make definite diagnosis.

We were told they were going to test for HPV (he's never smoked) and I looked it up and like others were surprised as thought this was mainly cervical cancer and no idea it could be the cause of H&N cancer. Because they said HPV has a better response to treatment we were hoping it was positive but for me I've found it hard as everything you read its says about getting it because of having several sexual partners. I felt embarrassed for my husband and for me especially that we have been together 20years. All I could find out was that it can lay dormant for 10yrs or so, no where said 20! you end up questioning fidelity on both sides which is not needed at a time when you're faced with cancer.

I told the radiotherapy specialist lady it felt like a 'dirty cancer'. We told none of family or friends it was caused by HPV as we didn't want to get judged. 

There was no help offered by the team when you get told and they must know it is going to cause anguish, I was worried if I could still get it if we had sex again and did ask. I didn't feel supported in this area at all. I think a sexual health counsellor should be offered to help with questions and fears.

I presume that if they just vaccinate girls they would hope it irradicates from boys too eventually, but this then could make girls feel they are the only one's who get it and pass it on which isn't true. 

Unfortunately my husbands cancer did return this time last year in lymph nodes and he had a neck dissection. All been fine since then though and we can virtually say he's been a year clear!! 

Hope no offence has been caused by my post, they are MY feelings on it and maybe a bit stupid to some.

Hello Camelot

I understand your anguish and I totally agree with you.

As I am in France I have had no support on this aspect at all...Just told very squarely that it was 'sexually transmitted' I too felt angry and although not dirty, very cross that I had been 'given it' like an unwanted gift.

I had cervical lesions about 35 years before and worked out that it had possibly come from that having lain dormant...but it was my own research which found that.

I think if the truth be known...they don't actually know that much about the transmission and how many different ways you could catch it....so they say nothing.

If like me you had one sexual partnet...what are you supposed to think?

I wanted more info on how long it can be in the system before it decides  to become or causes cancer, I have been with my husband for 20 years so it made me question him. He admits before me he had had quite few partners. I was also married before. 

There was no information on safety for us on sexual intimacy and practise which is what I wanted reassurance on and it did without a doubt make that side of things difficult for us.

I don't think Michael Douglas helped when he said he got the cancer by having oral sex!!

I had nothing like that either...and my very first thought went to what Michael Douglas had said!!!

They did tell me it was possible for the virus to be in the body for 35 years...which was the time lag for me from getting the cervical lesions to the tonsil cancer.

It is not a nice situation to be in when you think you have done all the right things by eating healthily, not smoking, not drinking and staying faithful to one partner.

As they say here 'C'est la Vie'

Hi All,

I was mortified when I read what HPV was and how you have it, when my husband was diagnosed but then after discussing it with others, it can be transmitted very easily, as easily as skin to skin, not necessarily (I was told) through oral sex.

Of course the Michael Douglas statement exposed or profiled HPV in the same context as oral sex and rightly or wrongly brought a lot of focus to HPV disease and cancer. I did feel dirty and violated, scared for my son, my daughter inoculated, but then I read more on it, got some advice from our team and never thought it was my husbands fault or mine, just unfortunate because ultimately my husband was ill.

Truth is there are many HPV viruses, there are a one or two that cause cancer but then some cause simply cold sores. Its a complex and little written about topic and almost taboo because of the heritage.

My advice is, its hard enough dealing with this disease without reproaching yourself or your partner on how they got HPV, could have been an innocent engagement that really isn't worth dwelling on, if at all it was the reason. Focus on moving forward and getting better and kicking its butt.

As it was my husband who had the cancer I took advice from the ladies clinic to make sure everything was normal and had a smear. You can't test for HPV by all accounts, could be bad advice so do ask yourselves, but the smear showed no abnormal cells and everything was fine, this was in between my regular smear. Just peace of mind.

Good luck everyone, stay snug and wrapped up for the holidays, season greetings too, make the most of this time of year even though it will be different for so many of you, find things to make your heart smile.

Best wishes

Sarah x