Hi Bobby 
I'm glad to hear that you're feeling so positive about your diagnosis and treatment plan. It will most certainly stand you in good stead for the next few months. 
I don't know if you've already connected with some of the other membesr here who have had the same diagnosis but can I suggest that you use the forum search function to look for posts by [@RadioactiveRaz]‍ , [@crofterlad]‍  and [@Taff123]‍  as a starting point. These lovely folk have all already been through the journey that you're embarking on and whilst there's a lot of reading to do, they have shared some great tips. I know that in some of the posts you'll find links to the personal blogs which they've also written which have lots of useful info. 

I know that the members who have had this diagnosis and treatment will say that it's not an easy process but please know that you're not alone. Keep in touch with us here and we'll do our best to support you. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi bobby

this is Hazel I am almost 2 year since post radiotherapy for right tonsil cancer h OMG with several affected lymph nodes the treatment is pretty brutal no,point lying recovery can be long .but a postive mental attitude got me through it. If u can help just shout I have a blog www.radioactiveraz.wordpress.com with links to other blogs and sites if u want to chat send me a friend request if I can do it anyone can.

hazel x

Thanks for your reply Hazel.

Jenn suggested to read your and few others blogs.

So will finish reading that today, did read a few others also yesterday, so all 3 were slightly different but some common themes also.

Especially good to see some potential things to consider to help with treatment and recovery, appreciate everyone is slightly different and as you mentioned this is a life changing moment not a journey. 

Few weeks before all kicks off for real, so trying to get prepared as much as possible just now. 

Admit after reading the blogs, it certainly hit home a tough time Especially with the mouth and throat is ahead, which is a little scary, but necessary to get better.

Interested to read that some evidence to show HPV could be passed at birth as opposed to previous relationships. 

Thanks again for your reply, i think i have already sent a friend request...

Thanks again

Bobby

Hi Bobby

I've just been diagnosed with tonsils cancer that's spread to lymph node with hpv I've had biopsy scans and just been in for camera and they said they can't operate, still hoping its curable and I'm so scared waiting for decision from board how are you doing now  is your treatment finished 

Alli x

Hi Alli.

So sorry to hear your news.

First of all, i appreciate we are all different and the level of cancer and how you respond to treatment will be fairly unique to everyone. 

Few initial bits...yes i fully understand this is a scary time, i was told that HPV cancer in the throat etc, has a very high success rate in being treated, not sure if you have had MRI or other scans yet, to confirm it is only in the neck/throat area.

To cut a very long story short

I received 3 x chemo and 30 x sessions of Radiotherapy, i was meant to get 6 chemo, but only got 3 as it was found i had a genetic heart issue. After treatment which is pretty tough on your body especially ability to eat/drink. It was found i still had some cancer in lymphnodes.  Had an operation 4 weeks ago to remove 13 lymphnodes.  Getting a scan in few months to hopefully get all clear....

Try and stay strong, in the first few weeks i hoped for the best, but also made initial thoughts on planning for the worst, certainly puts things into perspective. 

I will try and send you another message, and a link to a blog i had started, but your on a journey, and like all journey's, there will be twists and turns, keep focused on the destination though..

Ask away anytime and will reply asap

Speak soon

Bobby.

Hi Bobby

Thank you for getting back to me hope its good news for you and that's the end of your treatment, had scans and was told that it hadn't spread so far just had op to have cameras in throat and waiting for the decision on treatment I called my Macmillan nurse and she said they would decide if treatment would be curative or palliative I didn't even think about palliative so I'm really scared now, she was probably just describing the process but its really knocked me for six and im normally really cheerful and positive but I just feel miserable

Alli x

Not 100% sure how linked the Macmillan nurses are to your Oncologist etc. So they are maybe just giving the wider conversation. 

They decided against removing my tonsils, as it can be very sore in Adults, but they try to avoid surgery these days i think?. 

Easy to say, but try not to worry to much, as long as its not spread to other areas, is generally a good sign, does take them a few weeks to organise and plan treatment. 

Try and if possible get out walking and excercise, i was shocked how much chemo etc can knock you for 6...

Not sure if your still working etc...suggest keep working as long as possible, as you will need the time off, once you start the actual treatment...

Keep me posted

Robert. 

Hi 

I ended up getting in touch with Macmillan nurse and explaining my concerns you were right she was just telling me how it works with the mdt  and told me that there's no reason that I can't beat this, feeling a lot better now

Take care x

Aww excellent news.

Keep in touch, happy to help.

Think it is better to be prepared for road ahead, but you will get through it..

Will be happy to catch up anytime 

Take care

Bobby x