Tonsil cancer - Proton Beam Therapy

Morning Lisa. I think you’re doing brilliantly especially being pinned down for so long. You’re a trail blazer in your Torpedo

Fingers crossed for the rest of this week. 

Hi Lisa. Take the good days when they come along. It helps spring was in the air yesterday thjnk a lot of people’s mood lifted. You are doing really well think longest I was bolted down for was  22 mins  once they struggled to get me lined up a fastener on mask wasn’t sitting right bin the end. You’ve got this 

Hazel x

Pleased to hear you've come out the other side. I'm having my mask made Monday and have T2 N1 base tongue and lymph node. Great to hear people survive this cancer. Need all the positivity  I can get. 

Hi Lucy. HPV +ve oral cancer is pretty much curable these days. The treatment is awful but pain is controlled well and mist of us make an unremarkable recovery. 
Stay with us and ask away. There’s a mountain of help and support here. 

Thankyou for the positivity I need all I can get. I'm 55 year old lady and I'm so scared of lasting side effects I may get. This diagnosis is life changing. Glad I found this group. 

Hi Lucy3 welcome from me  Dani has covered things so won’t repeat. We do get side effects remember we don’t get all of them. Take if one day at a time. Yiull he looked after ar Christie’s presume you’re coming home for weekends? Know Lisa was put in hotel Monda  ti Friday. Remember HPV driven tumours respond extremely well to treatment. We are all here to help and offer advise. 
hugs Hazel 

I was 61. When diagnosed niw nearly 5 years on. 

Thanks Hazel. Great to hear its nearly five years on from your diagnosis. My brain has had so much information to take in over last 4 weeks since  diagnosis. Yes I will be put into accommodation and treatment is Monday to Friday. A member of family can stay also. Will keep you all posted.

Hi Lucy, I had proton beam at Christie's Manchester. I live in the area so could travel each day but I know others who have stayed in hotels whilst having treatment. 

HPV cancer is very curable. My cancer was tonsil, soft pallet and lymph node. Treatment can be hard but places like this can give lots of tips on what helped us whether it be eating and treating, pain relief etc. You'll be given lots of support by people who have been through the same journey.

Is there any part of the treatment you are worried about lovely? 

Message me anytime

Lisa ️

Thanks Lisa. The chemotherapy and side effects scaee me  and long term side effects from radiation. Greatful to hear others who have been through this treatment  reassurance of hope. I'm hoping for cure as hpv 16 positive very treatable. Journey us daunting ahesd.  a day at a time. Thanks

Chemo effects are transient except for hearing loss.  Tell the team if you get tinnitus. If antisickness meds aren’t working there are others that will. 
Side effects of radiation are indeed long term but most of us cope. The main one is reduction in saliva but this improves and doesn’t affect daily living at all. 
Four years down the line I notice it sometimes but I’m back to normal…... Ish. 

I get sore throats with weather changes. 
The only thing that reminds me I had cancer is being here, truthfully