Last Friday my mother was diagnosed with a Squamous Cell Carcinoma of the Tonsil. She had been concerned for a few months about her tonsil enlarging, and after moaning at the doctor it was finally removed on the 20th August. The consultant had done an MRI scan and assured my mother it was nothing, but when it was sent for a biopsy it was confirmed to be a Squamous cell. The doctor seemed quite positive,however I am terrified of losing my mother, and feel quite scared at the moment. I am trying to group together some questions for friday when she is seeing the cancer specialist. I wondered if anyone could advise what iare the best treatments she should expect, what I should ask etc. I am a little concerned as when I have been reading up on head and neck cancers the chances of sucess seem poor, I suppose Im just asking for as much info and any experiences people have. Thanks.

This message has been edited. Last edited by: Dr Vinod K Joshi,

Hi

I'm so sorry to read about your mom's diagnosis.

There are quite a few folks on the site who've had tonsil cancer and are doing well, so I'm sure someone should be able to help you.

I do hope for the best for you and your mom; please let us know how Friday turns out.

Julia

When you go to the hospital it is a good idea to write any questions you may have down on a piece of paper .You need to know the stage of the cancer,if the lymph nodes are involved,what treatment they are recommending,if she is having radiation will she be given a PEG tube for nutrition.also find out if you have a support network such as macmillan or marie curie to get help from if you need it,in fact anything you can think of that you want to know really.

Please dont judge oral cancer on statistics.Many here have survived to tell the tale (see Hagg twelve year survivor and David twice over survivor and many many more).I have been a member here for 2 1/2 years and survivors certainly outweigh the ones we have lost so dont despair and try to be positive.

good luck

oh thanks guys! Im feeling a bit better now. Im in fighting mode for my mom! Mom had her tonsil removed on the 20th Aug, so im concerned about time scales now. Its been 3 weeks, does anyone know how soon treatment should start after her initial appt with the oncologist on Friday? The doctor said her MRI in june had no secondary tumours other than the tonsil, so he did not see the need to repeat it, however I just wondered if anyone else had been given a repeat MRI before treatment and should I push for one? Thanks guys for the replys, its made me feel alot better!xx

Hi LLH
Please ignore my reply on the survivor thread, didn't realise that you Mum had already had her op.
Good news is that it is just a primary cancer, so no need for more extensive surgery like I had.
Radiotherapy is typically 3 weeks after surgery (ie as soon as the patient is fully recovered) so as to prevent any cells that may remain from multiplying too much.
Wouldn't worry about a repeat MRI, but I would ask about starting R/T asap.

Hi 200. Thanks, im actually just reading up on waiting times for RT, seems like there are delays, I was hoping she would be able to start next week, but if her appt is on Friday I cant see it starting next week. Im just shocked that they expect people to wait so long for things like this. We live in one of the richest countries in the world and we cant treat people because of lack of RT machines, its shameful. Anyway ill stop moaning now! Lets hope they pull their finger out on friday. Will the chemo start soon also? Any tips on pulling forward radio treatment times? Thanks

Hi LLH,

I am no expert but I don't think it's just a question of machines. They have to plan the radiotherapy treatment very carefully and that takes time. For me it was a couple of months from diagnoses to starting R/T.

Best wishes for your mum

regards

Ken

Hi Kenny, thanks that makes sense. I suppose they do have to plan treatment carefully. Its just the waiting and wondering if its spreading etc thats the worrying part. As I said I will kep everyon posted on what happens friday. fingers Crossed.

Hi Everyone just a short note, I hear everyone talking about Pegs, could you please explain what a peg is, thanks.

Click PEGs for more information and click PEG problems for a past discussion. You can also search for other discussions on PEG feeding using the Find button to look up the keyword 'PEG'.

quote:

longleggedhair
Posted 10 September 2009 10:58 PM
Sorry I seem to h ave got this website the wrong way around. Should have posted on here first to say hi to everyone. Just for those who dont know my mother was diagnosed with a Squamous Cell of the Tonsil last friday and we are due at the hospital tomorrow for her appointment with the oncologist.

I have found the responces Ive had from this site great, really does show you there is support out there.

i will update all tomorrow on what the oncologist says. Thanks guys! Oliver

Vinod: Oliver's posts have been consolidated here.

Bad news it would seem guys....the oncologist thinks it may have spread to her tongue and neck glands, although he is unsure, CT and MRI scans next week, then treatment. Very scary time I feel strange, im scared and I feel sick and tearful and fear which is so bad im constantly in a state of panic. It seems her last consultant was less than useless, it took him from May before he has found it, so given it months to spread! The doctor also wants a scan of the lungs although he thinks its unlikely to have spread, but ive heard that one before! it all just seems so unfair and the NHS less than caring, maybe im being harsh but oh well. So there you have it..

Hi
I am sorry that the news seems a bit daunting ,but i promise you its a scenario that many people here have lived through and survived.I would like to give you a word of advice.Anger is very very counterproductive at this early stage and believe me i speak as one who really does know.For now you need to concentrate 100% on getting things in place for your mum and supporting her.This forum has all the information you will need to guide you through the next few weeks and i would read as much as you can.Knowledge is power and if you are going to get angry you need to know what you are talking about.Lack of confidence in your doctors is not a good place to start and it may be worth getting a second opinion and maybe a referel to another specialist.You need to have faith in the team who will be treating your mother and be able to ask and have answered all the questions that may arise.You are allowed to panic for a short time then you need to get it together and get involved.Once you feel as if you are in control of the situation you will be calmer and able to tackle everything head on.

Its amazing what you can do in a crisis and i am sure you will be fine.

Hi Guys,

Feeling a bit more positive now after the weekend. The consultant said mom had a 70% chance even in the worse case, so I have to be hopeful. Ive contacted the PALS officer, and he is pushing for mom to have her CT today, she has her MRI on wednesday and then the MDT are meeting on thursday and the clinic is on a Friday, so it will be a busy week.

Also mom has to go to the Birmingham dental hospital as she needs her teeth checking before radio begins. And then her treatment will start at The Queen Elizabeth hospital in Birmingham.

Mom seems in good spitits, shes told me she inteds to be around for many more years to moan at me!!!!!

One other thing I forgot to mention was that mom has never smoked or drunk Alcohol, but she has always drank red hot Tea, and I read this can cause Throat Cancer, anyone have any thoughts? Thanks

Longleggedhair,

Hi, I know this all is a bit suprising, but be strong for your mom and be there when she needs you.

I have been thru scc of the tongue and one lymphnode. I have never smoked and only drinking I have ever done is wine coolers, wine and diaquiri's maybe 10 times a year if that! I was diagnosed at 30 years old. November 14th 2008!

I have had part of my tongue removed and 25 lymphnodes, one was positive. I also did 32 rt treatments earlier this year. I am back to work and have been since April 13th. I have two small boys 6 1/2 and almost 2. My younges was 2 weeks shy of 1 year old when I found out.

So it doesn't matter if you fit the criteria it can affect many different people. I have an uncle by marriage that had tonsil cancer did chemo and radiation and he still smokes.

Best of luck to you and your mom! If you have any questions feel free to ask.

Sincerely,

Pam C.