Hi Starlight81,

I was diagnosed with Tonsil Cancer roughly 4 weeks ago and am due to start my treatment in a few weeks with Radio/chemo with possibly surgery to follow pending outcome of initial treatment. The toughest thing for me individually is i have no family or nearby friends to have as support and only the team who will be directly involved. I have two gaming buddies from the USA who are fully aware of my status so i decided to join the forums and start making new friends. The other unfortunate problem i suffer from currently is severe anxiety which makes travelling publicly impossible so i have arrange patient transport.

Hopefully you'll add me and we can chat

Hi Starlight

I had no symptoms with my tonsil cancer. I found a lump by accident when I woke up one morning with a sore throat which was unrelated to the cancer. I looked in the mirror and noticed a large lump on my right tonsil. I went to the doctor's with this and even they didn't believe that it was cancer which delayed my diagnosis. The lump was completely painless, hard and didn't move when I pushed it.  I didn't have earache or any other symptoms. You probably wake up with a dry mouth for the same reason I do which can be down to sleeping with your mouth open and or acid reflux in the night. 

They still are monitoring me on a three monthly basis so fingers crossed. 

I hope you get good news back from the results of your biopsies. 

Hi T

Ive stumbled across your post as I'm currently being treated for what I think is a similar diagnosis to your brother. How did he get on? I hope all is well. I'm halfway through treatment and front feeling and viewing we can see the treatment is working well. Although side effects have started to kick in now and eating is becoming a chore! 

Regards

mike 

Hi yes my brother finished all his treatment in may and is now doing great.he is taking 2 energy drinks per day and eating small amounts although his taste is not the same yet. All his check ups have been good.he had neurondocrine stage 4 and I was worried it would not turn out good but actually he has recovered really well.how are you doing ?

It will get worse before it gets better not going to lie it's one of the most horrendous cancers as it effects your eating.when you are able try spicy curry foods for the taste and also to try and get some sense of taste pineapple is good for tongue 

That's great to hear. Congrats to your brother, you and your family. All Cancer is terrible and yes this one is not cool on the eating front.

May I ask what treatment your brother was prescribed? I am having four cycles of etoposide and cisplatin three weekly. Third cycle next week. Am also now 15 out of 30 radio sessions through. Eating is getting harder now and I've just started some light pain relief. Appreciate it's going to get tougher but one day at a time as they say. Not many on here diagnosed with Neuroendocrine on Tonsil. Was it also on a neck node?

cheers 

Mike 

Hi. He had 30 radiotherapy and  2 sessions of chemo not sure what type. It had spread to his neck lymph node where the lump was originally . He had to have 'll his teeth removed so It was a long haul with getting the gums to heal in order to have New Teeth plates.he still can't get the bottom plate in as gums damaged so has to go to 8 new dentist appointments to try and resolve and get new plates so he can bite and chew food.im sure you will be ok it doesn't seem like that at the time and you will find you look at life in  a new perspective . Keep positive and think of things you want to do then your better.also focus on a wee holiday to get away from all the medical appointments .you will need a break to think everything over that has happened. Sometimes it hits you like a ton of bricks but ignore the bad vibes and smile and it will be ok

Hi Tina,

my mum has been diagnosed with stage 4 Throat cancer and nearing the end of her treatment. This was wonderful to read... I really needed a little bit of hope!

Thanks Tina! 

How is your brother in law doing now? 

Hi Mike,

My mum has been diagnosed with the same cancer and undergoing the same gruelling treatment. It’s been tough on her, I hope you’re doing well! 

Best wishes,

S