Hi 

no problem glad to help. Re swimming nope I am now 10 months and have been gradually acclimated tibbeing here do just plaster fsctor 50 all around my neck but I don’t lie in the sun   It’s into sea quick dip then straight back to shade. But if ivwas in your position yes would wear s light buff you can get them online or any good walking shop. 

Enjoy your break let us know how you get on. 

Yes unfortunately it’s becoming more and more wide spread 

hoping by 2050 the numbers will drop dramatically my oncologist says 

best wishes 

hazel x

Hi lilie 

Same advise still applies can you get your positivity back on track. Am sure plenty of people have survived  h p v status as far as I know is a relative new stat . Keep off google any info on there is st least 5 years out of date or taken between 2008 to 2014 look how fast things change.  Do you know your staging ? Ie T2N2NM was mine ie had spread to lymph nodes but no where else what’s yours ask !

treatment is still the same  advise don’t drink alcohol as much as u may want to don’t know if u smoke if u do stop now. 1 guy in my treatment timetable wasn’t h o v snd smoked n drunk but he still got the all clear he even smoked during first 2 weeks treatment which wasn’t good. So speak to consultant or nurses don’t get dien there is no reason you can’t kick it’s butt. Ask why they said positive first. Ask is it post that you were positive st first biopsy but h p v had left your body justvssk ask ask 

keep in touch H xx sending hugs. 

Hi everyone and thank you

In answer to some of your questions this is my understanding of what's happened to me:

I found a lump on right side of my neck which tested positive for cancer (16 positive whatever that is) in 2 lymph nodes which was secondary. The primary was found in my right tonsil. I was told most probably HPV virus

Had loads of scans and more biopsies of neck which again were 16 positive? and the cancer was only in tonsil area and lymph nodes which again apparently means HPV+

Had 3 back teeth removed and tonsilectomy 4 weeks ago and have been waiting confirmation of HPV+ ever since although kept being told it will be

Was offered the Compare trial as although not a heavy smoker (up to 10 per day) but a long term smoker. I don't really drink hardly at all maybe at Xmas or special occasions

Still going along with being HPV+ until today when I was just told that I'm HPV negative

The whole time I've been being told I'm HPV+ I've also been being told that it's easily treatable and curable which isn't the case for HPV negative

I don't know the staging I can't remember of I was told 

Stopped smoking in mliddle of May 

I don't think the medical team that I saw today realise the impact that this has had on me 

The treatment is the same and it begins in just over a week but now the light at the end of my tunnel has gone out and I'm just at a loss now

Thank you 

Really wish I knew if my partner was HPV+ or not. The consultant once mentioned it but I couldn't remember if he said "could be" due to HPV or "is" due to HPV, along with this list of could be due to smoking years ago. I kept asking my partner to ask about HPV but he wasn't too bothered and never asked (I didn't attend those appointments). It was never mentioned again. He's clear now. 

Hi if you are saying lymph node tested +16 positive the +16 refers to h p v strain as there are almost a 100 strains of h p v 16 + and 18+ being the 2 that in my understanding relate to Head and neck cancers so am. Confused as well. Think in monday  you need to speak to your oncologist secretary and ask for a call from consultant do you have an assigned Macmillan nurses ? Do you have any letters stating staging and h p v status on each of my letters that were sent to dr in bold type was the above info. If you have had no letters go to your g p on Monday and ask for copies once or twice  I had to do that . Please don’t think the light hasn’t gone out as it hasn’t. Who told you today ? Did you querie the confusion with them 

try and sleep tonight

Hazel x

Hi

I don't have any letters but I've left a message for the cancer nurse to ring me on Tuesday when she's back from leave 

Yes my lymph nodes had needle biopsy and core biopsy and both came back +16positive which apparently is 99.9% HPV positive so all along I've been told I'm treatable and curable because of the probable HPV status but now after 4 weeks (which seems a long time) my tonsil has come back HPV negative.

It was Consultant Oncologist that told me today

I'm now wondering if I've got 2 different cancers as it's all so confusing and I didn't ask any questions as was too upset 

Thank you xx

Hi Ian,

Thanks for this thread. Helped me through my own treatment that ended just over a week ago. I may not have posted at the time but I tuned in a bit. 

Bit of background: 43, HPV 16 positive, reasonably fit! For Lillie re HPV 16 mine was listed as something like 'probable' not definitive. Had the tonsillectomy within a month of diagnosis. All in actually from diagnosis to end of treatment was three months which was nice and quick. I was one of the 3 cisplatin and 35 radio dudes. Unlike some of what I read before treatment the chemo rather than radio kicked me around. I would be very nauseous and the meds never really got it totally under control though to be fair the vomiting did stop for the most part in week 4. I had a chemo cycle where after about 14 days I would get an infection and be hospitalised for a week. Not the end of the world but annoying. I would also lose a few kgs the weekend after I received the chemo. All my weight loss came then and would-be stabilised by the Tuesday or 5 days after. I lost 1.5 stone overall from 14.5 to 13.

 On the radio side I have had reduced symptoms compared to a lot of what I have read. Yes I have dry mouth but it is ok except first thing. Mouth pain was minimal though I do now have late mouth ulcers but they are fine. My swallow is constrained and an annoyance but I lost no mouth opening and ate throughout treatment. I was on soups and porridge from about week 5-7 but actually started back eating the week after treatment ended. Pure luck as cafe had no soup so had to try a quiche! I should note I did the speech and language exercises religiously so that probably helped. It is a bit sore but not excruciating. Taste is a bit off. Savoury all fine but sweet is gone weird. Some ok but the likes of chocolate is a bit gack. Mucus in the morning takes a while to clear and probably my biggest annoyance. Compounded by the chemo chest infections I got but it takes me about 20 mins in the morning to get going. 

My consultant took part in that world wide study a few years ago so knows her proverbial but she is scanning me at 9 weeks rather than 12+. My tumour in the lymph nodes took ages to respond and the surrounding tissue actually grew by about twice the size. She is on holidays but I suspect they know they will have to do a neck dissection and are getting in early. It should be said you would hardly notice anything now and it really stood out a few months ago. Anyway that is my story so far....

Hi 

re neck dissection don’t worry too much. Emma aka Newley married her hubby had same as you they had fair idea he would need neck dissection which he did 12 days before they got married wedding went ahead now he has just passed 3 year into remission.its surprising how different we all re act

Hazel 

Hi Lillie 

did you get to speak to nurse yesterday. Have bern thinking about you over weekend 

please keep in touch  don’t get down you need your strength fir treatment 

hazel xx