New here - and a bit lost!

Hi Kevin, welcome to the group, but so sorry you find yourself here. Your diagnosis and treatment sound very similar to my husbands. We only found out last week that his was a Grade 2 tumour and he started his treatment in Dec 2024. We asked at the ENT checkup meeting and was shown for the first time. I’m not sure why we were never told to begin with. To be honest we were both in shock so barely took in what was being told to us at the time.

I’m not going to lie and I certainly don’t want to frighten you …. But the treatment and recovery are hard but definitely doable. my husband was supposed to have a PEG fitted but due to heavy bleeding from the mouth it was deemed too dangerous so he started without a feeding tube. 2 weeks in when he found he really couldn’t swallow anymore they fitted an NG tube. It wasn’t a nice to have it was a necessity. He still lost almost 15kg during treatment and recovery but he was a big bloke before hand so it wasn’t too much of a concern.

He is now 15 months post treatment, is eating almost normally albeit he still finds spicy food a challenge, which is a shame as that was his favourite, but he’s getting there. He is currently cancer free and although it’s always a niggles in the back of our minds, we are enjoying our lives and looking forward and not back.

if you click on my name you will see our journey. If you have any questions, please feel free to ask. You have joined a brilliant group of people who will give you as much support and information you need. Just ask. Theres always somebody about to chat to.

if you’re having trouble sleeping there are a bunch of people who chat on and off all night about all sorts of things.Its called Awake and Up All Night. Give it a look.

Big hugs, it’s a scary time, we’ve all been through it so know exactly how you are feeling.

Debbie x

Hi Kevin and welcome to the Community 

KJ72 said:

I’m kinda panicking about the effects on my throat and my ability to eat/drink/swallow - the hospital seem quite relaxed about it, but I’d be keen to hear from anyone who has experienced similar and if they had to go down the feeding tube route?

Try not to panic. The treatment is pretty hard, I will admit, but most of the acute side effects can be mitigated. Chemo can make you sick but you'll get antiemetics to smooth the way and you are lucky, in a way, that you are getting two big hits of it rather than smaller weekly doses which many people get as you have a chance to recover from it. The main side effect of the RT is to burn the inside of your mouth and throat which is what causes the pain and makes it hard or impossible to swallow. Most of us get a feeding tube placed before we start. I didn't have that option and was given a nasogastric tube in week four. It was a life saver. If you haven't been offered a PEG before you start don't worry. NGs are easy to put in and cause only minor discomfort while they were being inserted. After they are in you don't feel it.

Don't be brave, tell the radiographers every day how you feel and whether you are having problems. There is nothing to fight, the drugs and your team are doing the fighting. Relax...the treatment doesn't last forever As for pain there are lots of analgesics on offer. I ended up on morphine and paracetamol alternated every two hours with long lasting morphine twice a day which sorted background pain and got me through the night. It kept me comfortable. I fed through the night via a pump connected to my feeding tube which left me the day to be human, not just a cancer patient.

KJ72 said:

I’ve also not had any confirmation of a stage/grade yet - is this normal? I seem to get woolly answers on it when I’ve asked the oncologist.

It doesn't really matter HPV cancers are not graded, just staged. They are uniquely sensitive to RT which is the main event. Cure rates are in excess of 90%

Have a read of this thread TIPS TO PREPARE before you start. 

The thread Debbie mentioned is Awake and up all night Just click on the links

Good luck, stay with us and ask anything you want. There is usually somebody around to chat with

Hi Kevin, welcome to the group from me. I had my treatment in 2017 which was 30 RT and 5 out of 6 full day chemo sessions. The treatment is no walk in the park and can come with many side effects which can be eased with medication, so be sure do tell your team if or when you start to get any. As for a feeding tube I would always advise anyone who is offered one to have one, my RIG was a lifesaver. The treatment and recovery can be very challenging; however it is doable and returns very high rates of cure, many of us on here are living proof of that. Stick with us we are here to help with any worries or questions you have.

Ray.

I had a PEG feeding tube in place for a few months...a lifesaver...my throat and mouth became too painful to even contemplate eating...Abbott nurses arranged a pump for PEG feeding which I used overnight...a bit of a pest but it freed much of the day up...my taste and appetite disappeared for the best part of a year then slowly returned.

It is a harsh treatment but very doable and many do not get hit with all of the side effects.

Hi and welcome ,i am currently in recovery from RT and chemo my diagnosis was very similar to yours i am awaiting scans to see if all went ok .I was fitted with a Rig 2 weeks before i started treatment and 2 weeks in i was glad of it as it was impossible to eat or drink i couldnt swallow full stop . The treatment was harsh and it will help if you can get your pain control in order before the side affects kick in, this may not be the case for you but best to be prepared .I couldnt swallow from mid December to end of February and i slowly started with sips of water but fairly quickly progressed to solid food .I had 5 teeth removed before treatment started and am now suffering where one of them was removed plus ulcers on my tongue so i am back on the Fortisips as it is painful to chew at the moment .Good Luck .

Hi Kevin welcome from me to the club nine of us wanted to join. I’m almost 8 years since u got out in the pathway next week. Don’t fret about stating head and neck cancer staging isn’t like the other cancers staging. I was t2n2nm the t2 is the tumour size mine was between 2t and 2n was nodal involvement nm was no metastasis. As others have said treatment and recovery is hard but if I can do it anyone can. Take it one day at stone tell your team any issues and stick with us. We’re all happy to help 

Yes I needed ng feeding tube week of treatment ur was my lifesaver everything fir almost 6  weeks went through it including meds  I looked at it as part if the treatment needdd  to get me better  

hugs Hazel 

Hi Kevin,  Bit of a facer all this!  I was T2N0M0 right tonsil and soft palette involvement in August 2025. Treatment: 35 radio therapy but no chemo as I was over 70 yo. Treatment finished end of October. I was fortunate, perhaps because of no chemo. I was able to eat soft food right through treatment. Stay on top of your pain meds and keep team informed. Keep up with exercise when you can I walked 2 miles every day and I do think it helped. Do your swallow and neck exercises religiously if possible and moisturise radiation area as often as you can. I do think establishing some sort of daily routine takes a lot of the pressure off. You’ll get through it. My PET scan showed complete metabolic response so I’m on 6 weekly checks. Good Iuck with it all. 

Caro.