Hello Ninetail.91, 

I am so sorry to hear about these issues you've been having - you did well to go to A and E when you experienced issues swallowing but I can understand why you are finding it stressful to have to wait 6 months to be seen. 

As you've experienced new symptoms in the last week, I think it would be a good idea to give your GP a call to give them an update. If you feel that you are struggling to swallow even more and are finding it hard to drink water or eat, it may be worth going to A&E. 

I hope that you will hear from others on the forum who have had this before and that they will come and share their experience with you. 

Fingers crossed that it all turns out to be nothing of concern and that you get some definite answers soon. 

Best wishes, 

Lucie, Cancer Chat Moderator 

Hi Lucie,

Well since this post I have been to the GP who updated my symptoms for the referral and I have been to A&E again and seems hopeless to be honest. The GP at A&E said my inflamatory markers are still up but thinks this may be to do with a viral infection and left it at that. Though I am experiancing no symptoms for a viral infection. He checked my lungs and gave them xrays but said all is fine with them so I kind of feel thobbed off to be told a viral infection when no symptoms. He gave no medication to help so I think he said it to get me to go away. Well thats how it felt.

Been told by all just to bite the bullet and wait for my referral basically.

Hi Redone

my situation is very similar to yours….now waiting tonsil removal and then a further op to remove cancerous lymph glands and original cyst

Good luck with your journey

Thanks for your reply, keep in touch and I will let you know how I get on, all the best and stay strong.

Hi Redone and Tigernymph just wondered on any updates with your situation? I had a bad cold/cough, glands came up but right side didn’t go down when cold went. After a few weeks I spoke to a GP who referred me to ENT. I have had mri and ct scan, also fine needle biopsy of neck gland. Tonsillectomy or biopsy booked under general for next week. Scary times so any insight re how you have got on would be helpful. Thankyou 

Hi Mandy

sounds like your journey started just the same as mine…after an original likely diagnosis of a cyst (which was drained twice and then harderned off) .my bloods weren’t showing inflammatory markers or anything wrong within. Having taken a biopsy from the tonsil, there was still no clear answer, so they took the whole tonsil and additional tissue out for further testing (that was done on 1st August) When I returned on 11th for the neck dissection (to remove 3 lymph glands and the original cyst) they confirmed it was tonsil cancer

So now I’m on the recovery path. Has affected shoulder and lots of facial and neck nerves and still pain and discomfort in swallowing . Rest, pain relief, pacing yourself, not rushing is what I suggest….but let’s see what they tell you after the tonsillectomy next week. I’m here if you want to chat but will be thinking of you in the meanwhile

Am seeing my consultant next week to see what else has been discovered post removal and the plan going forwards which is likely to be radiotherapy….take care x

Thankyou would be good to keep in touch. Good luck for next week and you take care too x

Hi. My updated so far, I was sent for a pet scan which apart from the tonsil showed up take in the gulit which turned out to be acid reflux and also on the prostate which turned out to be urine in the uretha, the tonsil was removed and sent for tests, it was difficult to tell what sort of sub type lymphoma it was, so they have called it low grade b cell non Hodgkin's lymphoma, which apparently is slow growing, iam on what they call " watch and wait" as I feel fine with no symptoms it very strange to be told you have this and there not going to do anything, I have a blood test in tree months to keep an eye on my blood count, I did have a few teeth removed in case I need any radio therapy and got chatting to a lady who said she was diagnosed nine years ago with lymphoma and is coping very well with it " they keep nocking it in to remission" she said. Keep well and keep in touch xx 

Thank you for the update. Encouraging for you to have met the lady who has had it for nine years, and that they going to keep close eye on you. Wishing you all the best x