Tonsillar SCC With Neck Nodes

History, i noticed a swelling on my neck 9 weeks ago, the DR gave me antibiotics, i returned a week later and was sent for an ultra sound, then an FNA then an oral camera examination.

The second Ultra sound operative told me it was benign

The FNA came back with SCC Likely source The Tonsils

The Camera examination had apparently showed nothing but like me he thought i had a benign tumour.

CAT Scan Clear expect for a lesion in my liver, possibly veins?

MRI Scan stated T1 Tonsils N1 Node

So i have concerns, 

1. Why did the camera examination not show the tumour on my tonsils when i was told it could have been there for years

2. If as the DR stated he did not see it as it was not there why is it now the size of a small marble 2 weeks later, do they grow that quickly

3. Ive now seen it for myself and im starting to panic as im not having my tonsils removed / a biopsy until next friday could this thing spread more so and how will i know as ive already had my major scans

Thank you i know im probably being paranoid but i feel ive been mis diagnosed and not told the full story so i find it difficult to trust the DR's 

Hi Mark. Welcome back. 
First. Have you asked your doctors all these questions? They are the ones who know. I’m sure they wouldn’t hide things from you and lie. 
Second. Most tonsil tumours start deep inside little channels called crypts which house the lymph cells. (Basically your tonsils are just like the lymph node that’s swollen in your neck but they are in your throat.) So they are invisible. With some people the cancer stays so small it’s never found. 
The cancer has spread to the next lymph node in the chain. That’s normal. The gland in your neck is doing its job. 
As for what ops are planned i should imagine having found the tumour on the scan and knowing you would have to have radiotherapy to the area even after your tonsils are removed the decision is to leave them where they are because the RT will fix  it. 
It also means they can get on with the curative aspect of your treatment more quickly. 
Most  people who have their tonsils out have them out to biopsy because the clinicians are still looking for the primary. 
Hazel RadioactiveRaz had tonsils cancer just like yours and she had only chemo radiation no surgery . She’s still kicking three years later. 
Don’t panic its quite likely it won’t spread past your neck nodes. 
Make a list of your questions and ask your CNS or at your pre op if you haven’t yet had it 

PS. You have to trust your team. They are in charge of your life for the next year. 
I found my throat cancer in early August and wasn’t on the treatment table till December 12 and 30 months later I’m alive and thriving 

Thank you, i never thought about the RT Sorting the tonsils ill mention it to my macmillan nurse, my problem at the moment is i have private health care and its getting mixed up with the NHS, i honestly thought id have a head start but all its doing is hindering the process, 

I feel awful, the pain i have in my sides and back is actually trapped air, nice, im not sure why its so bad ive never had it before and it started when i had my scans, ive now got a dull ache in my mouth and left ear.

Ive got MRSI and covid tests on tuesday, some kind of dentist appt on wednesday, another MRI On my liver thursday and then my op on friday

:(

Hi mark

yes this is me I’m still here living life to the max. I m 3 years post radiotherapy for tonsil cancer with several affected lymph nodes

my cancer was hidden in tonsil crypt no one can see it apart from mri or pet scan could visually see it. As for it bejng there years did they mean h p v would have been in body years ? That was my case.  
You get so much info it blows your mind . Write everything down you want answers to give a copy to consultant it’s what I did. 
I was 63 days from start of diagnostic tests to treatment starting so don’t stress it doesn’t grow that quickly. I was T2N2Nm 
The dentist appointment is to check your teeth can stand  the rigours of treatment it’s usual 

I had the lumpin my lymph nodes at least 2 mjnths before I went to g p I was on holiday  in Spain  

to start with consultation also thought not cancer it was a week later they said s c c 

hazel 

Hi Hazel, I believe the consultant meant the cancer, her words were, it could have been there for three or even seven years, as my cancer is visible I'd assume they will remove my tonsils, the consultant wrote on my letter +/- tonsillectomy, I'm not sure what that means,

What was the chemo for, did you notice the lump reducing as you went through your RT, how did you feel?

Apologies if this is all written in your blog I will take the time to read it. 

Hi Mark no worries. 
the chemo was to eliminate the cancer in the lymph node s as I coukdnt have a neck dissection as I had several nodes one of which was close to spinal cord. Which in turn made it too dangerous to operate. Plus my trust generally don’t do neck dissection s they prefer to zap with chemo. Yes I did visibly see the lymph node  disappear. Not everyone does dome it takes weeks after treatment for them to go. 
Is your cancer h p v driven ? 
How did I feel. On diagnosis day devastated thought ok I was going to die. After meeting oncologist and the team super confident I was going to live. The more i learnt the better I personally felt. Some people don’t want to kniw me I am a person who needs to know tge detaiks. Hence why 3 years on I am still helping others. 
treatment is brutal no use lying recovery can be long.  But am typing this from holiday cottage in Northumberland living my life as before. 
No question to silly to ask. Read blog when you’re up to it no rush. I did it for me as the only thing I could control. Now it helps many others to know cancers not an automatic sentence in many cases. 
Hazel 

os I didn’t have a tonsillectomy I only had a biopsy the radiotherapy did the rest it also melted the uvula which is the dangly but at back if tongue but showed it worked. 

Mark777 said:

+/- tonsillectomy

Hi Mark. It means they will make the decision whether to take your tonsils out (+) or leave not (-)

Thankyou for your replies, will they take both tonsils are leave both, i dont think i could stand checking the remaining one if they leave it but would be happy if they left them both as i know they have a job to do

Yes im HPV Positive which went down really well with my wife at first, Not, 

The fact you are both here posting is a credit to you both, and to the others who stay and help, i hope i can do the same in the future.

That Uvula thing will not be missed, mine is always getting infected and it feels like im choking sometimes, 

Hi mark. H p v can stay in your body years  . My hubby snd I have bern together since he was 15 I was 17 now were 62 and 64   So please tell your wife not to stress. We don’t know which of us  gave it to the other we’ve probably   been playing pass the parcel with it passing it to each other. In fact we both could have had it.  I know I’ve not had an affair snd John hasn’t he was a coal miner went to work came home. Etc we joke about it. Keep off google tell wife the same it can be caught simply by kissing an effected person do don’t dwell on it. 
concentrate on getting better There us no  stigma to h p v when  it’s cervical so why should there be any other h p v cancer. 
hope this helps helps. 
Hazel

if you want to chat send a friend request I’m on holiday but will get back to you