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

Hi Tigernymph how did it go with your consultant as bd your treatment plan? Right tonsil removed last Thursday so still going through some pain with that. Consultant meeting for me tomorrow for biopsy results x 

Hi Mandywu

i saw consultant last week and he told me it was HPV+ (which is the better one to have) primary cancer in tonsil and secondary one in the lymph “cyst” which is what originally appeared back in February

Back to see the oncologist, specialist nurse and SALT team today for 3 back to back meetings and was totally overwhelmed with information (crashed out on the sofa and slept when I got home!) Essentially 6 weeks radiotherapy but told me am also having a once a week dose of chemotherapy to make the radiotherapy work better. Will have to have an overnight stay to have a feed tube fitted into my stomach…and back on Monday to have the mask made…..

Had my swallowing checked which is still an issue although less painful and have issues with opening my mouth enough and jaw pain (trismus) so have exercises for that

Good news is, treatment not until beginning of October so still some more healing time

How are you managing with swallowing and fluids and (presumably soft ) food? Good luck with results tomorrow, have you got anyone to go with you or a list of questions? I found it easier doing them the night before and now have a folder with all the questions and information I have been given throughout

I will be thinking of you, take care

Mad isn’t it to be pleased to hear a  HPV+ cancer diagnosis, but I am hoping to hear same tomorrow given the better outcomes.
Not surprised you were exhausted after all that and it doesn’t sound fun but a relatively short period of unpleasantness to destroy the cancer and get you back to being you is the prize to focus on.
when meds fully kicking in the pain swallowing is manageable but an hour or so before I can top up again is tough. I am keeping my water intake high and managing to eat something each day but is limited. Today managed some yogurt, small piece of fish and some mash and a Rachel’s divine rice pudding. Total calories only c600 but is something. 

good idea to prepare questions, will do that now. 
thinking of you too. We can beat this x

Mad isn’t it to be pleased to hear a  HPV+ cancer diagnosis, but I am hoping to hear same tomorrow given the better outcomes.
Not surprised you were exhausted after all that and it doesn’t sound fun but a relatively short period of unpleasantness to destroy the cancer and get you back to being you is the prize to focus on.
when meds fully kicking in the pain swallowing is manageable but an hour or so before I can top up again is tough. I am keeping my water intake high and managing to eat something each day but is limited. Today managed some yogurt, small piece of fish and some mash and a Rachel’s divine rice pudding. Total calories only c600 but is something. 

good idea to prepare questions, will do that now. 
thinking of you too. We can beat this x

Hi Mandywu

was thinking of you and wondered how you are getting on and how the meeting went with consultant for biopsy results?

Hi small primary in right tonsil and secondary in neck gland. HPV + highly expected but they not confirmed that as yet. 
I need my top right wisdom tooth extracted as in the path of the radiotherapy so waiting for appointment, but hoping will be next week so planning meeting/mask/scans can be done to start treatment 2 October. Six week treatment plan so 30 rads with 6 chemo which will be Wednesdays. 
All now starting to feel very real, although my head sometimes can’t compute that is happening to me. I am nervous for sure, even anxious for the tooth removal! But having forum like this so can share experiences snd thoughts is going to be helpful I think as know not alone in it all, and friends family however loving and supportive can not 100% understand the feelings you go through. 
I am 99% over my tonsillectomy now so that a relief, are you able to swallow okay again now post yours? 
how was the mask fitting? 

Oh and they are going to fit a nasal feeding tube in week 3. 

Hi again

Ypur journey is so very much like mine-even down to the tonsil and neck (although mine is the neck) . So have you had the neck dissection as well as the tonsil removal?

I have 6 weeks radiotherapy and chemo once a week (mine is Tuesdays) starting 2nd October as well but having an abdo feeding tube fitted (going for initial discussion on Monday next week and then meeting chemo nurse for discussion the week after)

I had the mask fitted last Monday-not much fun as the tech guy doing it wasn’t listening to me answering his question that I have still got so much facial sensitivity/nerve issues/pain ….but we got part way through first try and I stopped him (was getting very distressed even though the two nurses were lovely-just thankful my partner could come!)

He then said “I know how you feel” to which I responded “you have no idea….and you aren’t listening to me!”

They then tried an different way to apply a second one and it wasn’t quite as bad….needed to breathe calmly and get my head into a meditation space which I found the best way of dealing with it. I still keep getting really dry mouth and swallowing issues so had water on standby for afterwards

To be honest the idea of the radiotherapy and the mask has had my inner child terrified and try to hide facing the wall. I found a Grizzo Gremlin when we were out the weekend before which my partner treated me too…and that really helps

Tqke good care and do stay in touch and let me know how things are for you x

Hi your mask fitting does sound stressful, well done for getting through it! I hope another week on your face sensitivity is starting to getting better? So lovely to have your little Grizzo to give you some comfort when your partner can’t not be there - really sweet idea. 

No, I have not had neck dissection so still have lump on my neck for now - can’t wait for that to be gone! My surgeon didn’t think best option for me so we will be treating with radio and chemo as first attack. Fall back to surgery if treatment doesn’t fully get rid of it, but hoping doesn’t come to that.

there has been a delay getting my wisdom tooth extracted (they simply so busy) which is now confirmed for 26th, this coming Tuesday. My mask fitting will be Thursday the 28th and planning scans on 29th. This means my treatment start date is delayed to Wednesday 11th October. I will therefore be 9 days behind you.

Getting the schedules for all the treatments confirmed has been comforting as although I know it will get tough, the sooner it starts the sooner will get the other side and the cancer can (and will!) be beaten. I have taken your lead and set up a folder and diary to keep everything together. I have also cleared a space in one of my cupboards to keep all my meds etc as I read there may be quite a few!

please keep in touch, and make the most of next week ahead of your treatment starting. We got this! Best wishes M x