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.

Cheers you can pay us later. Lol xx Ian think we need to get that book going ? 

H x

I think we do Hazel lol

Hi Hazel

I think yours and Ians bloggs will be well read for years to come for sure!!

So many people coming onto cruk looking for advice, and so many young people too!

HPV+16 has a lot to answer for. H&N clinics are going to be busy for many years yet to come I think.

PS when the manuscript is ready can I proof read :-)

S xxx

Clara - get us some cremola and you have a deal lol

ian

Hi Clara going for  film rights as  well. Lol of course u csn oroof read it all proceeds to H & N cancer research. It is the fastest growing one st the min my oncologist is hoping when the boys get started on vaccines this September that by 2050 it is starting to be eradicated so our grandkids hopefully or get grandkids won’t get it. 

Cremola I can’t remember it thankfully or maybe I didn’t like it . Although blancmange was another thing I remember mum dishing up xx

h xx

Great news my doc says the scan shows that the treatment has worked and Iv responded really well, when I asked if that meant I had the all clear he said no we can never say for five years and I will have to look for signs of it returning especially in the first year but this is as good as it gets, no signs of cancer showed up in the PET scan, we are out celebrating later what a 61 st birthday present...its the one I wanted :D

Great stuff Dave and well done.. It's also good for everyone on here to read all of our positive outcomes after treatment. Another positive story to re enforce that the light at the end of the tunnel exists.
Mind you, my consultant was a little more positive with his language and message.

Really pleased for you and a great birthday present.

Onwards & Upwards

Ian

Thanks Ian he does play it down with his language thats how he`s been from day one, never over the top so Im used to to that, it shows how we have different experiences with our consultants.

He said i`ll never get my saliva back fully to where it was so im going to have to prove him wrong.

Dave

Hi Dave great new s onwards and upwards from here. Was thinking about you this morning happy birthday enjoy and celebrate. Ageee all consultant s gave differing ways of delivering the news but the pet ct scans are as good as we can have u know w some hospitals only do ct scan. Happy Easter to everyone no matter where you are on the journey. Onwards n upwards to infinity and beyond. Keep in touch suoernan

Challenge is good saliva has 2 years to improve  I am finding chewing sugar free gum with xylitol is helping makes sure it’s xyitol and not sorbitol as the main ingredient as we have to protect our teeth  look online 

hazel l best wishes Julie and family 

Hi Dave great new s onwards and upwards from here. Was thinking about you this morning happy birthday enjoy and celebrate. Ageee all consultant s gave differing ways of delivering the news but the pet ct scans are as good as we can have u know w some hospitals only do ct scan. Happy Easter to everyone no matter where you are on the journey. Onwards n upwards to infinity and beyond. Keep in touch suoernan

Challenge is good saliva has 2 years to improve  I am finding chewing sugar free gum with xylitol is helping makes sure it’s xyitol and not sorbitol as the main ingredient as we have to protect our teeth  look online 

hazel l best wishes Julie and family 

Thanks Hazel its just sinking in off out now to celebrate X

Enjoy xx