Hi barb, my name is paula and i have just been diagnosed with stage 3 T3N1M0 tonsil / soft pallet cancer,

the grading sysytem you see above grades a cancer from clinical observation, ie the symptoms you present with and the results of initial tests.

my tumour started in my tonsil as a small ulcer but has been aggresive and in 3 weeks has taken the right side of my soft pallet, the hole is about the size of a a golf ball cut in half..so more than 2 cm but less than 4, its graded a three because it has left the original site of the tumour in other words it has migrated out of the tonsil and into the soft pallet. so that makes it a T3, it would have been T2 if it was contained within the tonsil tissue,

the N1 stands for the number and size of any lymph Nodes, I am lucky and only have 1 lymph node which is less than 3cm so i am N1, you can have several lymph nodes and if they are all smaller than 3cm you are still N1 i believe you become N2 if they are more numerous and bigger etc etc,

M0 means that at present i do not present with any Metatstases hence M0, i have only had a head and neck CT scan so far. they say I dont need a PET scan but I live in NZ and tests are very expensive so I wonder if they are just being a bit tight!...lol

now they should give your family member a grading...or at least a staging. i came out stage 3 of 4

the more nodes the more significant the migration from the original site...but dont panic if there are no metastases or signs any were else lymph nodes local to the site can be included in the treatment plan. 

an important thing is if the tumour/cancer is HPV positive, if its HPV positive then survival rates are significnatly improved...mine is HPV positive.

i am 49, non smoker , like a glass of wine or a cocktail or two on occassion , how old is your family memeber? if they are younger or around 50 it is more likely to be HPV positive statistically ...sorry i am a nurse so sometimse i get a bit statistical!!!!!! lol

I hope this helps, its scary but treatable in most cases, the road of treayment is RUGGED i am told but I have not started yet so can not advise on that. Type in squamous cell carcinoma of the tonsil to the search on this cancer chat site and you will find the chat a few of us going through the same thing are visitng , theer is a guy on there called Vatch who wrote a blog through treatment which whilst confronting is written with humour and provides a lot of info, i googled "gamma ray gary" to find it. 

I wish you luck ...

Paula

Hi barb, my name is paula and i have just been diagnosed with stage 3 T3N1M0 tonsil / soft pallet cancer,

the grading sysytem you see above grades a cancer from clinical observation, ie the symptoms you present with and the results of initial tests.

my tumour started in my tonsil as a small ulcer but has been aggresive and in 3 weeks has taken the right side of my soft pallet, the hole is about the size of a a golf ball cut in half..so more than 2 cm but less than 4, its graded a three because it has left the original site of the tumour in other words it has migrated out of the tonsil and into the soft pallet. so that makes it a T3, it would have been T2 if it was contained within the tonsil tissue,

the N1 stands for the number and size of any lymph Nodes, I am lucky and only have 1 lymph node which is less than 3cm so i am N1, you can have several lymph nodes and if they are all smaller than 3cm you are still N1 i believe you become N2 if they are more numerous and bigger etc etc,

M0 means that at present i do not present with any Metatstases hence M0, i have only had a head and neck CT scan so far. they say I dont need a PET scan but I live in NZ and tests are very expensive so I wonder if they are just being a bit tight!...lol

now they should give your family member a grading...or at least a staging. i came out stage 3 of 4

the more nodes the more significant the migration from the original site...but dont panic if there are no metastases or signs any were else lymph nodes local to the site can be included in the treatment plan. 

an important thing is if the tumour/cancer is HPV positive, if its HPV positive then survival rates are significnatly improved...mine is HPV positive.

i am 49, non smoker , like a glass of wine or a cocktail or two on occassion , how old is your family memeber? if they are younger or around 50 it is more likely to be HPV positive statistically ...sorry i am a nurse so sometimse i get a bit statistical!!!!!! lol

I hope this helps, its scary but treatable in most cases, the road of treayment is RUGGED i am told but I have not started yet so can not advise on that. Type in squamous cell carcinoma of the tonsil to the search on this cancer chat site and you will find the chat a few of us going through the same thing are visitng , theer is a guy on there called Vatch who wrote a blog through treatment which whilst confronting is written with humour and provides a lot of info, i googled "gamma ray gary" to find it. 

I wish you luck ...

Paula

Hi Paula, I hope this doesn't come off as crass or rude but I do feel like it needs to be said as I've run into some of your posts. It's very good that your cancer is HPV+ as indeed it does generally respond to treatment better - however, how well a cancer responds to a treatment is individual and at the end of the day the best thing someone told me on here is that you are a statistic of 1, whether you're HPV+ or -. There are many factors that work into the prognosis of a cancer aside from this, and continuously asking people whether or not their cancer is HPV+ or - and following it up with HPV- cancer having a higher mortality rate means that in a place of comfort and support people who might not have the HPV-virus related cancer will end up feeling even worse.

I'm sure this is not your intention at all but I wanted to make you aware of how it can come across. I feel it would be akin to people asking others if their tumour is of the aggressive kind or not and then talking about the dangers of the aggressive ones. At the end of the day we're struggling with the same thing, and the unpredictability of cancer means that we don't know what will happen until we're in treatment ourselves. Hope you understand what I mean. Good luck with your treatment (and I'm glad you are HPV+, always nice to read good news).

No need to apologize at all! Especially not for getting wrapped up in your own disease, that's exactly what you should be doing. Focus on yourself more than you ever have now. I hope I didn't make you feel bad it was really not what I meant. I was certain that you weren't aware of how it might have come across, so I just wanted to let you know! I'm very sorry to hear that it's aggressive but coming back to HPV ( ;) ) it is very good that it's positive for it, meaning you'll be aggressive right back at it. Don't feel bad for feeling good about that for yourself. I'm just thinking that some people don't even have that straw to grasp for, so it might be very tough. 

When does treatment start for you?

Hi.. It's ok I'm fine...

Treatment touchy subject all tests done quickly but wait to see oncologist could be 3 weeks and this thing is taking a little bit of my oral cavity every day.. Tonsil, soft palate, numb tongue, can't feel top right teeth.. Blah blah blah

Any way the fight continues.. Being a squeaky wheel to try and nitro them up..

And seriously no worries 

Paula

What's your story/ battle? 

Don't worry just read your profile... Such wisdom for  one so young...x

Hi Paula and lynne

hows your week been then and what’s new for next week then?

vatch

I’m seeing the oncologist on Monday and I’ll be told of the decision they’ve made regarding my treatment plan, team of specialists are meeting early Monday morning to discuss my condition and treatment. I had an MRI scan on Wednesday, nervous it’s shown up anything more

I am being blocked by the specialist nurse from hell! Treatment three weeks away minimum! So slow! Going mad

Lynne

sounds like it’s all coming together and try to hang in there waiting for results

paula

i am so sorry to hear that your cancer jorney is not a supportive one from the point of your medical team, hang in there with them and don’t let these issues get in the way of asking questions or telling them something that you see as little ..... it does help to have a working and good relationship with your team, I doubt the service will suffer it’s more sometimes just the relationship......Paula perhaps define some of you issues and perhaps we will be able to advise if it’s the norm or we can give you some help moving this forwards ... although in a different country the moderators on here are excellent and can help too

so to both of you

keep your spirits up, you have a lot going on at the moment And I guess you are both trying to get everything sorted right now ..... that won’t happen as you are not and will not be in control of what is about to happen. However be assured that everything you are trying do foresee and plan will help towards what you are going through ..... if you have a good network of friends and family around you .... my advice is cash in on this support as your treatment process will not only impact you but those taking you back and forth to hospital and those living with you .... 

i am very much a planner not so much a control freak and did transport schedules for friends that were taking me the 1.5 hour daily trip to the hospital ... half way through they started to change things, which I questioned and they had a go at me and told me they had it all organised .... I just had to sit back and let them get on with it ... and they did a great job and I will always be thanks full to them for it 

shout if you have something on your mind

vatch

Oh one thing you both might need to do ... two actually

1. Find yourself a place in the house where you can keep and easily access any medications you need to take during treatment. If you are having chemo you will start up your own chemist shop and if you have a PEG fitted you will need a place for stuff ... I went I bought myself a cheap plastic wheeled storage cabinet and stuck it in my bedroom ...it worked very well

2. You will need to carry stuff around with you wherever you go .... if you have chemo it’s important to carry a bit of medical info and drugs that you need to take ... just in case it’s needed. If you have a PEG you always need to carry a spare... just in case. And if

it reminded me of having a baby and all the crap you had to take out even if just going to tescos

vatch