Next steps

Hi Samantha 

Welcome to our community. So sorry you’ve found yourself here but we are a friendly bunch and there are lots of people to help you on your journey

Its not an easy treatment but it’s doable and cure  rates are very high, even better if your cancer is HPV positive 

I have a blog linked below. I didn’t have surgery or chemo but had six weeks RT. That’s the bit that’s tough. 
Also Hazel RadioactiveRaz should be along soon. She had exactly what you are going to go through and there is a link to her blog too. 
if you click on her name you can look for the link in her profile. 
Have a read, don’t be alarmed because there are so many things to make life easier 

Came back and ask any questions you want. None are silly. There will be an answer somewhere

You can send anybody a private message if you prefer by clicking on our avatar

Best of luck. You’ll do it. 

Hi Samantha, sorry to hear this diagnosis, it is exactly the same as my diagnosis except i did not have surgery just radio and chemo

The condition is very treatable, do you know your HPV status? If its a hpv initiated cancer it is even more treatable.

As for what happens, well after the surgery- the radio and chemo will begin with making a mask for the radiation machine.

We are all different in how we find it, personally i didnt find chemo too bad (i took my nausea meds religiously) and i only ever had mild nausea once- i took my laptop in and worked during chemo as i carried on working throughout the whole of treatment.

The radiotherapy - the first 3 weeks i carried on as normal and actually gained weight, it was about week four my mouth started to get sore, and about the end of week 4 it got really sore.

But- although you feel quite poorly for a couple of months after treatment, it does gradually get better, by about week 11 i was pretty much pain free (i still get a dry mouth but no pain)

Anyway id definitely read the blogs listed, they helped me a fair bit, and of course any questions feel free to ask!

Trev

Hi Samantha. Welcome to the club that none of us want to find ourselves in but here we are. I am hazel aka radioactiveraz tonsil cancer with several affected lymph nodes 35 radiotherapy sessions 2 out of planned 3 big chemo sessions (some have 6 smaller sessions ) I was diagnosed in May 2018 and am living my life. This part the waiting and fear of unknown is honestly the worst part. I was treated at Leeds cancer centre where are you if you want to tell us.

Like Dan says you can click in avatar send friend request if you want to chat in depth. 
can’t lie treatment is brutal but If I say I cry if I break a fingernail I went through it with positive mental attitude it wasn’t defeating me.  I wrote a blig link below. 
pleasr don’t go on dr Google you will scare yourself silly.
hope to hear from you

Hazel x 

Hi Samantha and welcome to the forum.

The treatment can be tough and although most of us experience similar side effects they may be to a greater or lesser degree depending on the individual. 

There are many, many of us here who have been through similar treatments and can offer support and advice when you need it so do come back whenever you feel the need or if you require further information having read blogs. 

Wishing you all the best.

Linda x

Hi, Samantha, i think most things have been covered already, all I would add is if you are offered a feeding tube a RIG or a PEG, I would advise you to have one. If eating becomes too difficult during your treatment, you can use the tube over night, then trying to eat is one less thing to worry about. I was totally relient on mine for about ten weeks, many others on here have had them and pleased they did. Even if you don't need it, it's there just in case you do. All the very best.

Regards Ray.

As Old Biker said if you can get a PEG do so as the Drinks are vile apart from anything else.

And the high sugar content rots your teeth if you can't brush them

Thank you everyone. It has helped me to know.  I will wait now till my op. I should know then if HPV positive etc.  At least I don’t feel I’m going into this blind.

im sure I’ll be back on here for more advice soon 

xx Sam 

Hi Samantha

Just to put a different (and unusual) spin on this I ONLY had surgery.  I think I am probably in the very small minority.  It was probably because they cannot find the primary site (not so unusual) so radiotherapy would have been on the whole neck and untargeted that they decided to save me the trauma and instead keep a very close eye on me for the next 5 years (now only 4 as I am nearly one year since surgery )

Hi Samantha. You seem to be exactly 3 months behind me on this journey. I was diagnosed with tonsillar scc - the typical ‘lump in the neck’ scenario - late summer and had the op (tonsillectomy with neck dissection) on 8th October.  
On 23 November, after everything had healed up nicely (!), I started 6 weeks of radiotherapy and 5 weekly sessions of chemo. My chemo ended last Wednesday (yes, I rang that bell!) and I have 5 radios to go.
I still feel fairly well, no significant nausea or fatigue, but my throat is sore and my neck is also getting sore from the radiation. It is manageable though if you keep ahead of the game with your meds and keep reminding yourself that this cancer is very treatable, curable even. I’m still managing to eat and drink, although I’ve lost all sense of taste. (Christmas dinner tasted like cardboard but hell, I had my Christmas dinner!)
These things, along with others like a dry mouth, are quite normal and you are right to want to be as aware as possible of what to expect, even though in reality everyone reacts slightly differently. 
Try not to worry. Don’t read too much about it other than from trusted sources, eg Macmillan, as it can look scary and you can get things out of proportion. Your hospital team is by far the best resource you have available  for info so use them. And there are some very helpful people in here too who have actually been through it themselves.
Oh, and do try to exercise if you can. I’ve aimed to walk for about an hour each day during treatment and have found it hugely beneficial both physically and mentally. 
Good luck, and keep in touch.