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.

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

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  

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

Dave  

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

I've been looking into getting the HPV vaccine for our son, so can say a little more about the cost etc.  We're on the south coast, and things might be different in other parts of the country, but both Boots and Superdrug do it for around £450-£475.  For over 15 year olds it involves having 3 shots, with a month between the first and second, and the third being given 6 months after the first.  They think it should give 10 years protection - by which time a generation of schoolchildren (hopefully both male and female) will have been vaccinated and the overall risk of coming into contact with a 'dangerous' strain of HPV should be lower.

The cheapest place for us is Lloyds Pharmacy chain who do all three shots for £429, but I don't know how much of the country they cover.

 

Hi jaxter thanks for tha I know the couple who paid £700 couldn’t get an appointment at Lloyd’s Superdrug or boots for months hence they ended up paying privately as his dad was being treated they just wanted their son covering. It’s great what information we can pull together 

thank you lemon ice very informative keep it coming

h x