Tonsil cancer stage 1

Hi Cassie,

I started radiotherapy for tonsil cancer on 23/11. I’ve had 7 sessions and no discomfort or pain yet. My sense of taste is just starting to change and diminish. Your oncologist will see you each week and prescribe medication, take it exactly as they tell you. It seems counter intuitive to take medication before you have pain, but it is to prevent it rather than to cure it. Keep on top of it, eat well for as long as you can, I’m still eating normally with no problems, as there will come a time when you can’t eat solids easily. This forum is good for support and very positive. Take it all a day at a time and know that in 6 weeks treatment will be over. I travel 80 miles every day for 40 seconds of radio therapy but it will be worth it. Have you got “the swallows” box of free sample goodies? If not ask your MacMillan nurse to get it sent to you, it’s really useful. Keep on top of oral hygiene to keep your mouth free from sores etc. The mask is interesting, very tight fitting, but necessary for treatment. I go to Lincoln and the staff are fabulous, they help with all questions you may have. Best wishes for a speedy recovery, Relax, go with the flow and don’t worry, they know what they’re doing and give excellent advice ans support,

take care

Sue

Hi Cassie

Welcome to the forum, stay with us as there is loads of good info and support here. For me for the first 4 weeks of radio there was not too much effect but after that my mouth become quite painful and there was an issue with taste. Everything starts to taste like cardboard (not that I have ever eaten cardboard) I had radio directed at my jaw but with tonsil cancer it is directed in that direction and your throat can become quite sore. You need to keep on top of the pain relief and take it regularly. They normally start you off with the lowest dose of pain relief i.e. paracetamol but it gets upgraded to something a bit more hard core such as morphine or Fentanyl patches. Don't be a martyr and ask for the heavier duty pain relief when you need it. Keep taking the paracetamol though as it really does help.

They will probably put in a RIG or NG tube before you start radiotherapy to help you with eating and taking pain relief. Everyone who has had one in has said that it was a godsend as swallowing became painful so definitely have one.

Take one day at a time and the 6 weeks will be over in no time and you will start on the road to recovery. This can take a while but you will get there.

Best wishes for your treatment.

Lyn

Hi Sheila S  welcome from me too

I had six weeks RT for cancer at the base of my tongue, it took around 10 minutes a day. I had blood tests once a week along with dietician and speech and language reviews which made for a long day. I saw my oncologists registrar once in treatment and my oncologist six weeks after I had finished.

I started on December 12th and managed a Christmas dinner. By new years eve though I was in a lot of pain and had to have an NG tube placed as I couldn't swallow. I had my pain relief tweaked nicely and the rest, though unpleasant, was all doable. You'll likely get some mouth preps to keep your mouth clean and as comfortable as it can be. I had Difflam, Gelclair, Caphosol and latterly Antacid with Oxetecaine which has a local anaesthetic in it. By the fourth week I was on morophine and paracetamol. My neck didn't get too burned and I managed the whole treatment without it breaking down. 

The NG stayed in for 8 weeks by which time I was managing liquid food.

Mu advice would be to not be brave. If you are in pain tell your radiographers who are your daily point of contact. Take all the meds thrown at you and ask for more if they aren't helping. Do your swallow and jaw exercises. Don't give up. the team is fighting your cancer. That's their job.They do it every day and are good at it. Your job is to look after and be kind to yourself.

Stay with us. You will have questions along the way and there are lots of people here to help

Best wishes

PS. As Sue has mentioned a support box from The Swallows.

If you email them they will send you one. It has some useful stuff in there. Chris@theswallows.org.uk

Hi Cassie  I’m Hazel won’t repeat myself yeh others have given more detail  when you’re ready look at my blog below it’s hard but I did it and so will you. Any questions please ask there’s always one of us around. 
Our cancers respond well to treatment, have you been told if its HPV derived, and do you know your staging I was T2N2NM

Hazel 

Hello. I’m 20 months post treatment for tonsil & lymph node cancer. I had bilateral tonsillectomy, PEG fitted then 6 weeks of chemoradiation. 6x chemo & 30x radio. I deliberately gained about half a stone before treatment began as I knew I’d end up losing weight as treatment kicked in. Do you have family/friends nearby who can help when you are in treatment & recovery? Listen to your medical team, do what they say, use your PEG if you have one, take pain meds on a schedule rather than when pain hits. Take each day at a time. Sometimes each hour at a time. It is a challenging journey, but doable. 

Hi Cassie

Sorry to hear about your diagnosis.

I had left tonsil cancer diagnosed in May, tonsillectomy late May. Then 6 weeks of 1x per week chemo, 5x per week radiotherapy starting late July.

Before starting I had a PET/CT scan - whole things takes a couple of hours and is fine. Mask fitting was a bit claustrophobic and, along with CT scan, took some hours. RIG tube insertion needed a night in hospital and was a bit uncomfortable for a few days.Spent some time with speech therapist learning exercises for swallowing. There is a lot going on at first so can be a bit hard to remember everything you are told.

The radiotherapy itself is quick - 15 mins total, of which about 2 mins is actual treatment. From weeks 2 onwards I spent an hour once or twice a week with the nurses making sure I was ok. I took paracetamol week 2, paracetamol +codeine week 3, a bit of morphine too week 4, and paracetamol 4x/day + morphine 6x/day for about 6 weeks after that (last 2 weeks of treatment and a month following). With codeine/morphine use laxatives! Constipation can be a real problem. And come off them gradually. I could always swallow water and some v soft food but lost taste and v dry mouth. I'd completely stopped pain relief 7 or 8 weeks after ending treatment. 

Now 13 weeks after treatment. Still fatigued - I sleep for an hour or two in the afternoon. Still not tasting a lot and mouth dry. I'm eating 'normally' but struggle with quite a few things (meat, bread, pasta, hot food,...). Otherwise doing well, regaining an interest in life, feeling fine most of the time.

Everyone is different. In my experience it has a not been a bundle of laughs. But it has never felt overwhelming. It has felt slow (to recover). 

Make use of what is available to you - the medical professionals are great, and people here are friendly and helpful.

best 

Hello Sheila,  welcome to the group I'm from East yorkshire  I was diagnosed in October with base of tongue scc I have had the mask fitting and this weekend the rig fitting , I start 30 days of radiotherapy mixed in with 6 weekly sessions of chemotherapy on the 6th December.  Theses people on here offer advice , tips and a friendly ear . Stick with us x 

Ahh thankyou for your reply there’s really no one to ask so thank you again xx

Thankyou xxx