Hi Cazza62

I just wanted to quickly pop on and say Hello! and let you know that we've got quite a few members here who have/have had tonsil cancer. Please don't feel that you are alone. 

If you have a look at this thread here and post a reply I'm sure that some of the members will be along quite quickly to say Hello. I',m sure that [@PlumB]‍ had a PEG fitted. If you use the Search function in the blue bar at the top of the page and look for tonsil cancer you'll also find quite a number of posts that you can read through and connect with other community members. 

As I say, have a look and post a message on one of the "tonsil" threads and you'll be chatting with others who been there in no time at all. 

Best wishes, 
Jenn
Cancer Chat moderator

Hi Cazza62

Just wanted to reply to you as my husband was diagnosed with cancer in early March and it’s the same as yours. He had a small lump come up in his neck last November and I nagged him to see GP who thought it was a blocked gland. Advised him to massage it and use a heat pad on it to clear it, saw GP again 2 weeks later and it had more or less gone. Then in February another lump came up on the same side but bigger. He was seeing the doctor anyway about a nasal spray so I said mention the lump which he did. It was a different GP this time who said I’m going to refer you to be on the safe side. He was seen by consultant within 2 weeks who examined him and said he suspected cancer but sent him along for scan and biopsy. We saw him again within 30 minutes and he confirmed it was indeed cancer, what a shock that was!! Things moved pretty quickly after that he had a PET scan, biopsies etc to find primary site. He had an operation to remove his tonsils, then day admission to fit the PEG. He was sedated for the PEG fitting but ended up watching it all on the monitor for the camera! He wasn’t looking forward to that part at all but said it was not that bad and he was quite fascinated by it! He started 6 weeks of radiotherapy on the 13th May with one overnight stay for chemo at the start and 1 at the 3 week mark. He starts his final week of radiotherapy tomorrow. 

He is doing well and the consultant, nurses and dietician are really pleased. His throat and tongue have been sore at times but not unbearable and he has not used much pain relief. He’s tired and takes cat naps when needed. The really good thing and I’m hoping this may make you feel a little better is he is still eating and has not used the PEG. He had a couple of days sickness after the 2nd bout of chemo but they switched his anti sickness tablets which did the trick. He’s eating things like scrambled egg, ice cream, cottage pie, soups, yoghurts, mashed potato and mousses. He makes himself a fruit smoothie every day, keeps it in the fridge and drinks that through the day. He also has a couple of the protein shakes that are sent via the hospital to keep his intake up. He has lost some weight but not a crazy amount. He finds when his throat is feeling a bit sore that ice pops really help.

Its only the last 3 days his neck has become significantly sore from the radiation. It’s had a red appearance from about week 2 but hasn’t been painful and the radiographer said his skin was looking much better than expected. He uses decleor prolagene gel on it every day which has no nasties in it and was originally created for burns victims, it’s definitely been a good choice for him anyway. 

So 5 more sessions to go and then a few weeks wait for the scan to see if fingers crossed, it’s gone! The lump in his neck has gone so that’s one positive. I’m not sure if any of this has been helpful and I know im not the one actually with the cancer but I feel like im going through it all with him so I can imagine how awful and worrying it all must be for you. If you’d like to ask anything please do and I will try to help or ask my husband.

sending you hugs and best wishes x

Hi, 

Thank you so much for taking the time to reply. You are going through this horrible experience too as I know my husband has been devastated  by this. Since diagnosis everything has moved so quickly we've barely had time to catch our breath.  He would do anything to take this away from me. I thought I'd done my time with cancer as had breast cancer 7 years ago, totally unconnected with this new cancer. I had a lump in my neck for a  couple of months, but had a similar lump about 2 years ago and my doc said it was just a raised lymph gland as my throat was sore, and that lump went really quickly so I didnt think much about this new one. I wonder now if that was a sign as I guess the tonsil cancer has been there a while, but I haven't particularky suffered from sore throats since. No point in dwelling on what may have been.  Just going to take one day at a time. Hope you and your husband continue to manage the treatment well and that my experience is as good as it can be to. 

Caroline x 

Hi, 

Thank you so much for taking the time to reply. I've now had a PEG fitted  which has been extremely painful for me- guess I'm just unlucky, I think most people dont have too much trouble.  Had first chemo last week and 6 sessions of radiotherapy- 29 to go. Got weighed for the first time today and have losr 2.5 kgs in a week. I'm finding eatng hard as I have zero appetite and a horrible bitter taste in my mouth so food tastes disgusting. The dietician has given me ideas on how to get more calories so I will give it a go as really don't want to use the PEG. Taking everything one day at a time . 

Hope the scan in July is clear and all the best for both of you. 

Caroline x 

Hi there

Am sorry to hear of your diagnosis and can understand your angst.

I was diagnosed last June with tonsil cancer and am still in recovery phase at the momment.
I kept a blog from the get go and its helped so many others from here (and abroad) and you might find it benefitial to hear what potentially lies ahead. Also plenty of good advice and tips and broken into sections with timelines etc.
Its not an easy journey duw to the threatment and location of where it is but on the positive side it is one of the most curable and one with the highest rate of success.
I also started a thread here called "Radiotherpay for Throat Cancer" and its under Living with Cancer.
This has been really quite popular with over a 1000 posts and many contributions from many should you also want to read that and also please feel free to join in.

Please see link below to my personal blog and also please feel free to ask away any questions or let me know if I can help in anyway at all

radiotherapythroat.home.blog

regards

Ian