Just diagnosed

Hi Mandy usually with lymph nodes spread like I did they biopsy the tonsil then treatment was the tried and tested radiotherapy snd chemotherapy to zap any remaining cells. This was what happened to me anyways. Rarely eith knowing where the primary is do they just operate as stray cells can be left behind. Hope that makes sense. 
any questions just ask. 
hazel x

my blog goes into detail if you want to look if not it’s fine. I am almost 3 years post radiotherapy now 

Hi thankyou yes that makes sense, I will read your blog thankyou 

Good evening Mandy, i dont know about tonsil cancer as mine were elsewhere in my mouth but on all my occasions they always did a biopsy before any operation or treatment. Perhaps they will remove the tonsils once they have done the biopsy and got definite results as they always follow certain procedures. Great news it has not spread and hope all goes well on Wednesday, best wishes,take care.

                                                                                                    Chris x  

Mandy, anything we might suggest is speculation. You may have a tonsillectomy or not. If the surgeons were going to do a neck dissection I’m sure you would have been well prepared for it. Sometimes cancer is inoperable like mine was and it was dealt with by radiotherapy. There are so many permutations. I can understand why you were swept away and didn’t ask. On reflection now is the time to phone up and find out what’s happening or ask at you pre op. We can only say what happened to us and that’s not much use. 
Pop back and tell us what’s happening when you know and the advice you get will be spot on. 
When is the op planned for? 
Good luck 

Op planned will be within 2 weeks for tonsils removal and neck disection I'm not at all worried about that but I'm terrified of the radiotherapy it sounds horrendous and a feed tube in my stomach, has anyone had this and can give me any advise, and what about the teeth I've been told it could affect teeth ? ...mandy 

Hi Amanda welcome to the club none of us wanted to join but nevertheless you’re in the right place. I had tonsil biopsy no neck dissection as my csncer in lymph nodes was too near spinal cord  they did chemo radiotherapy. Yes your teeth will have to be through it checked t make sure they can stand the rigours of radiotherapy. I was lucky mine were done if you need dental treatment during or in the period after treatment it can cause problems. Although the treatment is hard I was 61 when diagnosed I had 35 radiotherapy sessions again  no peg but I had to agree to a n g tube fitted if need be. I needed it from week 3. You can do it just take it one day at a time snd ask on her any questions beteeen us we’ve covered most things 

Hazel I’ve a blog details below it might help you with links to others as well x

i an now almost 3 years post treatment snd living my life to the max 

Good evening Mandy, i had a neck dissection when i had my first encounter with cancer with radio and chemo afterward including the fitting of a PEG during the operation. I honestly did not suffer that badly with the radiotherapy but mine was for the floor of the mouth so a different area. The main side effects are tiredness, lack of saliva, and soreness due to the radiotherapy, like a bad sunburn. We all react differently and i would say i preferred the operation to the radiotherapy as the healing and recovery were quicker. I had to have about 3 teeth removed as they would have hindered the radiotherapy or if any are decaying. It can affect the teeth but its nothing drastic its just one of the side effects that can happen, there are so many side effects which majority of them do not happen, i was told that if only one person had a side effect it was put on the list a bit like any drug even paracetamol has a long list. The feeding tube is not a problem it just takes a few days to settle down, you will fit it a great benefit for your recovery. Nothing is easy with cancer but its all doable just take things a day at a time as you will have good and bad days. Wishing you all the best for your operation, please re-post if you need further advice. Take care. 

                                                                           Chris x

Hi Amanda,

I was diagnosed back in March this year, I had one tonsil which was noticeably larger than the other one and was sent for an urgent ENT appointment. The consultant seemed concerned having looked at it and he discussed the possibility of it being cancer. He said he wanted to take my tonsils out, essentially in order for them to do a biopsy. The biopsy came back with it being SCC HPV+ T2 N0, so I didn’t have nodes affected like you do. They advised 6 weeks radiotherapy required.

The tonsillectomy was painful but the pain was well managed and eating was not particularly pleasant but soft foods were fine.

I needed 3 teeth removed prior to radiotherapy as they didn’t think they would make it through the treatment.

In my area (North of Scotland) my consultant advised that they do not fit feeding tubes unless they deemed necessary once treatment has commenced. Luckily I was able to eat all the way through my treatment (albeit weetabix, soup and rice pudding for a few weeks).

I also found myself on this site a lot reading other people’s experiences (sorry, I’m a bit of a lurker rather than a poster, but thank you everyone on here who has helped me through!), and found myself anticipating side effects before they happened based on other’s experiences. I would think, ok, here I am at week 4, the pain will ramp up now and I won’t be able to eat etc. This is something I suggest you avoid doing. I have learned that everyone’s experience is different. Whatever you experience your team guide you through it.

I think I had a relatively easy(!!) ride in that I managed to eat all the way through, I was able to drive myself to my appointments as only needed stronger pain relief from week 5 (fentanyl patches, lowest dose) and I honestly found that it wasn’t nearly as bad as I thought it would be.

I’m now 6 weeks post radiotherapy and although have had ups and downs, I’ve made it through. I’m still pretty fatigued most days and have the usual dry mouth and lack of taste but I got there and you will too.

Good luck x

Hi Mandy

I hope the pre op went well and that you had the opportunity to ask all of those questions that you had, I am sure your medical team could answer them and ease your fears.

Let us know what was said at the pre op. There are lots of variations on how to treat us even though our symptoms are similar. The experts will decide on the best course of action for each of us.

 I had cancer in my tonsil and spread to 2 lymph nodes and had a tonsillectomy then 30 RT sessions and 4 lots of chemo. I am now 14 weeks post treatment and although it’s been tough at times I am through the other side and you will get through too. 

There are lots of good people on this site who can offer advice and support so please come back

Wishing you all the very best 

Michelle x

Thankyou everyone a feel a bit more at ease now, the surgery is just the start , I'm so glad you've all got through this it gives ne hope your all so kind, I know it will be tough and I'm sure there will be so many more questions as I progress through this , you've all been amazing I'll update as I go on,  thankyou all again Mandy