Hi London

I am same situation, how were you diagnosed? have you had FNA-PET/CT-MRI scans? When you say having a op do you mean a biopsy of the tonsil?

I was diagnosed following referal by my dentist, following FNA I was told lymph nodes contain P16+ probably HPV. You wont get staging until all the other tests are done it takes a bit of time. 

Tomorrow I will discover my fate as I meet the whole team for the first time, to say I am scared is some understatement, it hard to know what to wish for surgery/radio/chemo or combo's of both, it really is hobsons choice!!

My advice, keep off Dr Google if you want a idea of treatment I would recomend two bloggs linked from here.   radioactiveraz.wordpress.com   or   radiotherapythroat.home.blog    both are honest warts and all accounts of treatment, not happy reading but truthfull.  Both these blogg writers are on here first is RadioactiveRaz and the other is Anchor1707 both are really helpfull. I already teamed up with a couple of people on here at the same stage as myself, maybe we can help each other on this sh!!ty journey...Make a frend request if you want to stay in touch.

Fine needle aspiration, its when they put a needle in your node to grab some cells so as to check if they have anything nasty in them.

Hi, yes that was done, and this is where we are now

So I had tonsil biopsy (actually I don’t have any they were removed when I was six) last Monday, also on the back of my tongue, I also had three teeth removed ready for radiotherapy. To be frank the teeth were the worst bit after, went to theatre at 4.30pm and was home 10.30pm (half hour drive away) the following day I had to get up early and go for MRI scan. 

So had a bit of sore throat this week but not really that bad, so hang in there the biopsy is not so bad.

Hi London 1 

welcome fo the club that no one really wants to join small,bunch if us in here who have been through Radiotherapy and chemo and now on then road e I a man 7 month post radiotherapy.

my blog is www.radioactiveraz.wordpress.com with a link in it to another guy Ian’s blog

good luckmdont panic keepmin rouch

hazel

Hi London1

You may find consultant will reply by letter setting out where you are at present.

You wont be given a stage untill all tests are done. There are two. one is the TNM the other is the

cancer stage. This wont be completed untill tonsil biopsy histology report. I find that you have to ask as docs seem to prefer to answer what you ask rather than bombard you with information they know you dont take in.

Your FNA biopsy of lymph node has told them + for cancer cells they then have to find the primary tumour. A CT scan usually pinpoints any tumour,in your case the tonsil but it has to be biopsied to formally give a diagnosis as the primary cancer.

On Doc Google,you will probably have read about neck dissection it seems very scary reading but, its not nearly as bad as it reads. Radical neck dissection is when cancer has infiltrated many nodes in advanced cases (like my husband). Modified dissection is for early cases with few lymph nodes involved and isnt scary at all (Ihad this type recently).

I think you have to get over the initial shock of diagnosis,then slowly start to absorb info. Take it a day at a time,dont try to jump fast forward you need time for it all to sink in.

PS: Eat as well as you can right now as you will have times when eating is very difficult and medical staff dont want you losing weight.so get a few lbs on if you can. x

Hi, thank you for explaining do you know how long I will wait for the tonsil results ?

Also when does radiotherapy start , is it before I get results as the tonsil biopsy is next week I presumed it would start the following week.

just seems a lot of waiting and worrying that things can get worse over next couple weeks,likely good of spreading between now and then.

Hi London,

Just by my experience, but I think you will need to wait for biospy and all tests to be completed so that consultant ccan make a determination on the best treatment plan.

Radiotherapy will in all probability not be the followong week as all has to be planned and booked in.
It will also depend on results as to whether any back teeth will be removed before radiotherapy and that would delay things a little to allow gums to settle.
Please try and stay off Google as so much mis information on there.
Try and stay to NHS based sites and also come here where you will get plenty of advice support and information.I wondered myself about the delay when I was waiting for treatment and was told the few weeks delay for treatment is not going to make any difference and wont be spreading that fast, so not to worry about.Also written a blog, like Hazel, warts and all and think I passed on another thread but I have re linked  for you to have a read which will hopefully help you be forearmed around some of the road ahead.

Please keep us posted with progress and ask away anything at all.

radiotherapythroat.home.blog

kind regards
ian

Hi London in my case I was the statutory 63 days from date of first being out in the cancer pathway ,it does take time if I had been any longer than the 63 days my hospital trust would have been fined .

after biopsy you will ill see consultant for m d t meeting then teeth will be checked in case u need any extractions , then the mask will have to be made it’s a well,oiled machine that unfortunately yiu can’t hurry .

hope this helps thebtime does pass quickly ,don’t worry about it spreading that’s why your lymph nodes come into play mine was eventually found in at least 3 , plus I hadn’t the original lump in  my neck for  at least 8 weeks if not longer  

Hazel