Hi

I just wanted to thank everyone involved in this thread, as reading it has been incredibly helpful over the last few weeks.

My husband had a swelling on his neck diagnosed as cancerous at the start of this month (April 2019).  It was a shock: he's never smoked, rarely drinks, cycles regularly, eats sensibly and is in good health - or so we believed.  Since then he's undergone a CT scan and biopsy which have confirmed the tumour as being at the base of his tongue and HPV16+.  He hasn't had his tonsils removed, as the sugeon doing the biopsy/panendoscopy thought they looked OK, but going by the scan the consultant thinks one has been affected, as well as some lymph nodes.  He gets assessed by the dental team tomorrow and has an MRI booked for the end of this month, plus whatever other appointments are yet to be arranged, with chemoradiotherapy due to start in about 4 weeks.

The last couple of weeks have been stressful (to say the least!), but this - and a couple of other similar threads - have been incredibly useful, as have the wonderful blogs by Ian and Hazel.  Having an insight into the treatments and their side effects meant that we felt quite well informed about what lies ahead even before speaking to the hospital consultants, and instead of everything being a blur, we were able to take in what was said and manage to ask some sensible questions.  Without all of you generously sharing your experiences it would have been a very different story.

Because of that, I wanted to let people know how important this thread has been for us - and that all your tips for coping with the treatment etc have been gratefully noted!  It's not a good situation to find ourselves in, but we feel pretty positive that we'll come out the other side in one piece.

I hope everyone who has posted, or who might be reading this, is doing well and continues to do so. 

Thanks again, and best wishes to you all

Have to echo this, prepared me so well, a Godsend.

Great to hear you are in good form Hazel, your posts are hilarious as well as informative

Dave

Hi all,

Just for info in case any unaware and wondering re frequency of check ups post treatment.

At my check up today with consultant - (just a little swelling still back throat but its fine)
They feel neck, have a look around mouth and I got scope via nose. and ask you how you are feeling/getting on. Appointment lasted about 15 mins I guess.

Anyhoo on checks ups I was told ( assume same for others )

Check up every month for first year after treatment

Year 2 to 4 checked every 3 months

Year 5 every 6 months

Hopefully then all still clear and in remission and no further checks.

Onwards & Upwards
Ian

Hi Ian brought the rain back with me ! Has brill crossing was quite worried as last May I was in a state in the boat , obv didn’t know at the time that it was the cancer upsetting my equilibrium! Spelt that without a spell checker. Lol ! My brain works too fast for  I pads keyboards that my excuse or other excuse I missed the week at school when we did spelling !!! Plus no one would have anything to laugh at if I didn’t do  typos  i have  proof read the above and maybe for once perfecto ! Grammatically rubbish probably. !

love being away but  like Insaybto John it’s a fantasy life we lead over there back home it’s the real world and wouldn’t want to be there permanently.

cathcing uo with game of thrones and tour de yorkshire

keep in touch buddy onwards and upwards.

H x 

Hi Ian just shows how things are different in different areas .

i haven’t had a scope up this diagnosis day mine don’t believe in doing them after that 

year one every 6 weeks ( I negotiated holidays ) saying you told me to go and live my life so that she what I am doing with provision I would fly home immediately if I felt anything wrong .

year 2 every 2 months 

year 3-4 every 3 months

year 5 every 6 months.

My check ups are flashlight down into mouth whilst he holds my tongue with a piece of gauze,that makes you feel sick.Good feel of neck area and general conversation of how I am feeling eating etc .

Maybe it’s coz us Yorkshire birds are tough !!!!!

Hope this helps people as like we say we are all different with the same diagnosis.

h x

HinDave how are you doing glad I make your day !!!! Back in good old Blighty .wwont ask what the boys are doing but a few of them need their p 45 s pretty dam quick without big payoffs . 

Thursday night europa leagues not going to do us any favours next season either.

keep in touch superman 

H xx

Im good thanks Hazel, still dry mouth problems especially when excercising playing football etc, I get bouts of fatigue too but overall good thanks, I have a check up mid June then every 2 months (I think) we are off to Gran Canaria at the weekend first holiday since last September when all this started, really ready for it :)

Dave

Hi Dave enjoy the holiday Julie amd yiu will be ready for it , justbremember factor 50 for the neck and mix a bit of fake tan in with it yiu will be fine. Plenty if water for flight unfortunately yiu will have to pay WH Smith a arm and a leg airside for it but I found flying dries me uo before and does more now .enjoy have a brill time

h x ps go into mercadona supermarket whilst away get Trident dental chewing gum with xylitol in it ut really helps I’ve brought loads back 

h x

Thanks Hazel good points I expect aircraft cabins can cause us to feel dehydrated, noted thanks.

Dave

Hi Dave i flew from Tenerife to Edinburgh and back last week, took 1.5 litres with me each way, with that and gum i was fine,no other issues, but booked aisle seat both ways for loo and to stand plenty. All worked great, bit dry nose. Glad you are doing well.

Thanks TFS all tips appreciated

Thanks TFS all tips appreciated

Is there some kind of epidemic going on with HPV related throat cancer? 

Iv just found out about someone else who has got it and his mate has it too.

Dave

Dave

Few of us in private messaging have been commenting and noticing the increase of cases on here as well.

Shame and not great to hear or see. All we can do is try our very  best to help all on here.

ian

Its worrying Ian, have you noticed that its mostly white people getting treated too? its something that I noticed at the hospital.

Dave  

Yes Dave the USA indeed call it an "epidemic" this HPV related cancer.

There is no vaccine to clear HPV from our systems as far as I know but certain vitamins can help clear it, is anyone trying anything or have any more info?

Dave

Another young lad has just posted with Hpv . I have directed him here for advice . X 

Hi Dave .yes unfortunately h p v 16+ or 18+  head and neck cancer in males is the fastest growing cancer in the western world 97% male and I am in the minority of 3% female which are the figures my oncologist gave me last year. 

He is hoping that by 2050 it’s is almost eradicated as young girls  age 13 providing parents allow it are vaccinated against h p v before they are sexually active likewise fingers x young males in the U.K. will be vaccinated next year around the age of 13 again parents allowing it. It’s up to us as cancer survivors of it to push the message across. You can pay for boys to be vaccinated before they become sexually active think is approximately £700 ,a couple who we met whilst having treatment (dad) had it paid for their 15 year old as they didn’t want him to get it later in life. 

Hope this helps explain. Little apparently 84% of the worlds population at any one time have the virus normally our bodies get rid of it within 2 years .

thus may be me but ut seem s that some of us are at a time of life where we are relatively fit before we get diagnosed and is this making  immune systems weaker ? And therefore easier for the virus to attack ?

rant over 

h xx 

Thanks Hazel, my consultant said as we get older things dont work as well as they used to..

we are renewing cells by the billions all the time and the HPV virus attacks our DNA and causes a cell to divide, that becomes cancerous and the process begins. 

As a woman you are even more unlucky than all the men  getting this, a rare case.

Dave

HibDave thank you was always special. Lol. Xx

Hi! I work in a research lab and I have been reading about HPV in the last years. As you may already know, it is a really common infection that 80% of people will have sooner or later in life and usually our inmune system can get rid of it. That's why you must have heard some vitamins help, but it is not directly true. As it has been mentioned before, it seems that there is a new "epidemic" of HPV related cancers, specially tonsil/base of the tongue, caused mainly by strains 16/18/58... Researchers thinks this is probably because there is an increase of oral sex and people tend to think that unprotected oral sex doesn't carry major risks, but also because doctors started to investigate this after finding this type of cancer in non smokers. In the past the smoking/drinking rates were way higher and we thought it was simply the cause for this cancer. But when younger people started to develope this, they focused on finding other risk factors and the HPV appeared. Since then almost every case is investigated to see if it is caused by HPV or not since it is a signal of good prognosis. Also, a "fun fact" is that HPV tonsil cancer was also thought to be less common in the past because people used to get rid of their tonsils when they were born. That doesn't mean that removing your tonsils when you are a kid will protect you from getting tonsil cancer, since small parts of tonsillar tissue can be left during the op and also it can cause your base of the tongue tissue to grow, but it seems to decrease the chances of getting it. 

You are correct, right now there is no vaccine to clear HPV from our system. At least, not yet. There is an investigation about a therapeutic vaccine (one that can clear HPV once infected) called VGX-3100, and the same company is developing a new inmunotherapy to treat HPV related head and neck cancers to avoid the actual treatment. 

What's the problem with HPV? Well, there are ways to keep track of HPV infections in the cervix and also in anal parts through smears... but that's not the case for the mouth. That's why VGX-3100 is focused on cervical and anal lesions. There is no way of keep track of an infection in the throat so most conclusions are empirical.

The scientific community is focused on vaccinating the entire population, not just girls as happens in most of modern countries right now. Gardasil 9 is supossed to give protection against strains 16/18/58 among others, who are the ones that cause most of cancers. We still don't know for sure if it also provides protection to the mouth/base of the tongue but it is reasonable to think so and thats why some countries are starting to vaccinate boys too. 

There are studies trying to understand how HPV infection of the tonsils work. It seems that the tissue of the tonsils "hides" the virus to our inmune system, making it harder to clear than in the cervix. But, until we find more ways of keeping track of infections and not wait until the cancer develops vaccinating the entire population and trying to find new ways of treatment to those who lose protection/are not vaccinating is the way to go.