Hi Ian - you kindly replied to a post I had placed on 29th June.  I have an update but when I tried to update you with it this evenig - I got a notification to say I had repleid to myself!  Hence I am replying to this post.  This is what I wrote this evening.  Hope you get it.

Hi Ian - Just to let you know I have my CT scan tomorrow at 9am.  I will keep you posted.  I have your thread and blog to hand when the time comes for my results.  I will post as and when.  Thank you again for taking the time to reply to me as you did.

Heddybell

:))

humour gets you through!

Hello Everyone!!

I've just had lots of catching up to do. I so relate to those battling to get their partners to eat, drink and take medication. I found it a nightmare as I found it practically impossible to get my partner to do any of these. But thank goodness he had the PEG so eventually he did start having 3 Ensure a day. Sorry I can't help, but know you're not the only ones with the battle. It was like living with a zombie for a few weeks, at the time I even wondered if we'd ever have proper conversations again.

My partner had radio and chemo in Jan/Feb and had his scan 3.5 months later. And then waited a whole month to see his consultant last Thursday. He was given the all clear! It's such a relief! We are also going to Greece! A cruise around the Greek Islands next month. 

Thanks to everyone for your support and updates.  To those going through it try stay positive, although I know that can be easier said than done. I joked with my partner the other day that he didn't exactly fight it with positivity (it worried me at the time as people kept saying he needed to be positive, he was the total opposite!). My partner said the cancer probably got sick of all the negativity and left

Hi louisabel

brillnnews baby steps and youndo eventually  get there just some done at slower paces than others. Massively congratulations enjoy your cruise , keep well hydrated and slap the factor50 on the neck and have a good time 

10 month I. I still have the odd Ensure as it’s  still important to keep calories in and  some days the food just doesn’t want to be eaten. 

Best wishes onwards and upwards.

Hazel x

Hi is there anyone here that has survived throat cancer that is HPV negative?

After nearly 2 months of being told over and over that my cancer is most definately HPV positive due to 16+ cells being found in the spread from my tonsil to the lymph nodes I have today been told that I am actually HPV negative. I don't even know what HPV negative is... Is it simply not HPV related? If so why isn't it just called cancer like all other cancers I'm so confused 

To say I am devastated is an understatement and am wondering if its worth all the treatment as all I have read has been low survival rates and how much better chance of survival with HPV positive cancer

I just can't see the point of going all through the gruelling treatment or the trial

My last little bit of positivity and hope has gone

Thank you 

Hi Lillie

I can empathise with you. When I first was diagnosed I was of the mind to refuse surgery etc but the folks on here are such fanastic supportive people I soon thought differently.

Did they say an error had occured on your hpv status? HPV Neg means you have tested negative for the virus. I believe all head and neck cancers are routinely tested for the hpv presence. The difference with HPV+ tumours is that they are receptive to therapy hence the better outcome stats. Although I have read this applies to throat cancers and not oral cancers(tongue).

Try not to do the google searches as it just makes the whole picture seem bleak. Many people have gone on to remain cancer free,as I am sure folks on here will come along and share their experiences with you.

My oncologist said I have a 40/50o/o chance of reaching the 5yr mark and that was before surgery. But I dont dwell on stats I just got on with it. If you dont try you wont know.

Try and find your positivity again. Take care xx

Hi Clara

Yes I know the difference between positive and negative but they've led me to believe it was positive for the last two months but now its negative so the whole outlook has changed

The primary was my tonsil which has been removed now (the tonsil not the whole cancer) and the secondary is in my lymph nodes

It seems all the people with good outcomes are HPV positive 

Thank you 

Hi Lillie

Try not to think of hpv status as changing the whole outlook. You may well respond very well to treatment only time will tell.

You didnt say whether you had a neck disection to remove nodes or is that still to come?

I can understand your anger at the change of hpv diagnosis,when my husband had his first round with cancer they diagnosed three different cancers from the most common to the rarist. We began to wonder if the labs knew what they were doing.Also following his surgery we were told they got good margins only to be told two weeks later that the lab was wrong and he had involved margins with a very poor prognosis. But he got 8 cancer free years. What I am trying to say is that sometimes what we are told does change and not always for the better.

My tumour was hpv+ but has no bearing to the 5yr stats I have been given. A trainee Dr said to me its a good and positive thing to be only to find out later that it makes no difference whatsoever. So both you and I have been given misinformation but in a different context.

Take care.xx

Hi- Sorry to hear this & that you are worried about it. Try not to dwell on the HPV neg thing too much-you have enough to think about and deal with.The statistics can be misleading- the numbers are for everyone-older people too with other illnesses-so if the did not survive after 5 years (thats the time they  give before say you are really clear) it may have been from another illness... or it will include smokers-which changes things- I would say the treatment is the same, if it cures it-it cures it.

We only found out about my husbands HPV status about a week ago (info wasn't on the computer, when we asked as being dealt with inbetween 2 different hospitals). We thought-as I've said-the treatments the same-so go with it, deal with what you have now, and why can't you be another per centage of the successes....x