Do you have any questions about radiotherapy treatment? Ask our volunteer radiographer...
Ask about treatment, speech, voice, or swallowing difficulties during or after head...
Ask our volunteer Dietitian, Alice, your questions about diet and cancer and she...
Do you need advice on how to look after your mouth during cancer treatment? Or for...
Just to say hello,
I was told i had HPV of the throat last Friday and am going in for a surgery this Wednesday coming. He thinks it started on my left tonsil and jumped onto my lymph node. He may remove the tonsil and any thing else he can get to while he is in there, he will enter thru the mouth. Has anyone else had this procedure ? how did it go? He also said that i will most likely have chemo and radio after.
It all started a few months ago when I noticed a swelling on my neck, one day it was just there. went to my GP and he referred me to ent for and examination, the specialist then sent me for an ultra sound and biopsy and then last week I am told this. My feet have not touched the ground it has all been so fast.
I am in no pain, have no symptoms, I recently passed a divers medical (had the lump at the time) I scuba dive, cycle and run, all that I have is this lump no bigger than the nail bed of my thumb on my neck. I am finding it hard to process to be honest.
When I went for the pre-op the nurse told me that it would be up to 6 weeks before the test results come back from the tissue that he will remove. 6 weeks! really .. is this normal? He also mentioned a CT scan on my neck, I assumed that would of been before surgery, guess not.
My wife is fantastic and keeping us strong and positive. oh by the way, my surgery is on our 21st wedding anniversary, which we take to be a good sign as it is a day of love and happiness.
its a scary time but you have found the right place to advice and support. The 6 weeks sounds an horrendous length of time but they do have to be sure of the exact diagnosis so that they can tailor the correct treatment for you. By the time my husband was told that he had cancer it was too late to have his tonsils out as it had spread to his lymph node and his soft palate, so we have no knowledge of this side of it but I’m sure someone else will come on and answer you.
a few valuable tips picked up from others on here
- stay off Google, ask your questions on here to people who have gone through what you are experiencing
- take someone with you to your appointments as two pairs of ears are better than one
- get a notepad, write down all of your questions and when you ask them at your meeting, out the answers down straight away (I became my husband’s secretary ) because you will all out of the room and forget what was said.
Keep us updated and try to stay strong
My husband is currently going through this, please see our profile.
At first the primary was unknown and wasn’t found by any scans. He had CT, MRI and PET CT scans.
Im not sure if the surgery you’re having is the biopsy my hubby had which is basically tonsillectomy, tongue base mucosectomy and panendoscopy. All of which is basically a good old rummage around and snipping off bits for testing.
His results were back in a week and he is now starting radio and chemo. He is not having a neck dissection due to the secondary tumour being on the parotid gland and jugular vein. We’ve still been told it’s curable though.
Hope this is helpful but feel free to ask any questions.
Sharon and Ken
Sharon and Ken xx
You never know how strong you are until being strong is the only choice you have.
I suspect (though I'm just going on other cases and my own) that the surgery through the mouth will just be a first step, probably just day case? If it's spread to your nodes then you'll most likely need a neck dissection to some degree which is a bit more invasive and will involve a hospital stay. Certainly for me I had the tonsil thing done as well as a tongue biopsy in a day but then the dissection to remove nodes was a five day stay, I think if you have confirmed node metastasises that's pretty much inevitable; but it's no big deal, it was (as my consultant told me at the time), "the easy part".
The no pain no symptoms is exactly how it was for me, my GP visit was for something else and I only mentioned the neck lump in passing. Six weeks sounds a crazy amount of time, I'm sure it'll happen quicker than that. Scans may well come thick and fast, I had PT, MRI and PET-CT in quick succession although none of them found my "primary".
Radio and Chemo is the tough yards but it's doable as many of us on here can testify, and you sound like you're in better shape physically to cope with it than most. Good luck with everything and keep coming back when you need to, most experiences you're likely to encounter will have been tackled by someone on here.
What is a Community Champion?
Metastatic SCC of right medial piriform fossa plus four malignant lymph nodes diagnosed 8th October 2013. Modified radical neck dissection November, thirty-five radiotherapy fractions with 2xCisplatin chemo Jan/Feb 2014.
Hi this is Hazsl aka RadioactiveRaz I am 15 month post radiotherapy for tonsil cancer with several affected lymph nodes your experiences so far seem to echo mine. I too onky had the lump above my collarbone bone . Biopsy is the easy part I thought , I then had 35 radiotherapy sessions and two chemotherapy treatment is hard but I was 61 and female plus I am a wi o if I can do it anyine can.
My tumour was T2N2NM h p v 16+ I had ct scN mrinscans and when I got to Leeds cancer centre a full pet ct scan and the mask was made the nhs have a protocol to follow is usually from first being refereed 63 days for ourvtype of cancer treatment to begin in my case 14 May referred and 16 July first day of treatment yes it’s a whirlwind but positive mental attitude gets you through it it seems iknto cry it’s ok to rant but at the end of the day stay strong
i have a blog feel free to read and post any questions someone will get back to you
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz,wordpress.com.
i give a honest account of my experiences with tonsil cancer
Safe payments by:
We're here to provide physical, financial and emotional support. So whatever cancer throws your way, we're right there with you.
© Macmillan Cancer Support
© Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man
(604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company
number 2400969. Isle of Man company number 4694F. Registered office: 89 Albert Embankment, London SE1 7UQ. VAT no: