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Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

just diagnosed, what happens next?

Beesuit
Posted by

Hi seeker

Most folk don’t get a chance to argue the toss over what hardware they can have. Some consultants don’t take kindly to it I’m afraid. However if you are going to have a permanent PEG I think you should insist, you’re spot on. 
As far as nasoendoscopy goes it depends on where your oncologist needs to look. Not all areas are visible easily by mouth 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

pixie76
Posted by

All done. Doc couldn't see any nasties down there so all good until my PET scan. 

RadioactiveRaz
Posted by

Brill news Pixie remember you from your early posts just look how far you’ve come.

good  luck with pet c t scan look forward to hearing your results 

Hazel x

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz.wordpress.com

i give a honest account of my experiences with tonsil cancer 

T2N2NM equals tumour size 2-4 cm 2 affected lymph nodes  later changed to several after pet ct scan NM no distant metastatic .35 radiotherapy sessions and 2 out if 3 planned cisplatin chemotherapy sessions.   Now fast approaching the 2 years since end of treatment. Good luck to anyone starting out will always help if I can  

Beesuit
Posted by

Brilliant. Such good news. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

seeker1
Posted by

I did mention that my hospital originally put me in a water one and for many weeks I had terrible pain and had to take painkillers. As luck would have it, it fell out and Royal London gave me a monarch one which causes no pain. I am now on the second monarch one and my regular hospital wont fit it so I went back to Royal London who fitted it and also gave me silver nitrate which my regular hospital refused. 

I dont understand you. The doctor wants to look at your breathing pipe, he can just as easily see it if the camera goes to the mouth where it doesnt hurt (which is what i do) or the nose where it does. He also can take his time having a good look at it knowing it is not hurting you. One doctor told me it is not done through the mouth because it is very dear equipment and one can bite on it and break it. I think this is ridiculous, there are things to stop you closing your teeth if that is what he is concerned about. 

Beesuit
Posted by

im glad you have reached a compromise with your doctor examining you by mouth and that you’re comfortable with it. 
I for one find any instrument into my throat causes me to gag so badly an examination is impossible. My oncologist is pretty slick with the scope which causes mild discomfort only. 

Dani
Squamous Cell Carcinoma base of tongue diagnosed September 2018. T2N0M0. 67Gy radiotherapy over six weeks December/January 2018/19
The blog is my personal cancer journey, warts and all. 

pixie76
Posted by

I did not have a choice which feeding tube I was given.  After a few days of having it changed its been OK.  The camera up my nose was a little uncomfortable but was OK.  I gag when things touch the back of my tongue so it nose was probably best for me anyway. 

My PEG will be coming out once I have my PET scan results. I'm eating fine now and maintaining my weight. 

PFJTHS
Posted by

I've found that the (dis)comfort of a camera up the nose depends on 2 things.  Firstly the skill of the operator and secondly the standard of the equipment.  At one hospital I was treated at the doctor was not good.  At my main hospital the doctor is a true expert and is done before I know its even in there!

I have also learned which nostril tolerates the scope better and make sure the surgeon know this.  I also find it helps to have my head restrained so I can't move away from the scope

It is not pleasant, and I've had quite a few now, but it is tolerable.  Ask to look at the screen and have them explain what is going on.  It's quite fascinating and certainly helps me.

I hope these observations help.

Peter
seeker1
Posted by

Unless you have something wrong with your mouth or tongue like I dont have I am sure the mouth is the way to go. I would also like to say as mentioned in my blog, when I started I had trouble drinking (caused by the cancer in the voicebox which enlarged it), the doctor could not find it only weeks afterwards when I complained again. He said it was in a difficult place to see on the camera. I would advise that more than one doctor should look at it. Maybe it could have been cured then. I have no adenoids I dont know if this makes the nose more sensitive. I have also written here often that I want my nose blocked off since acid finds it way up from my mouth then they wouldnt be able to use the  nose for the camera but they refuse to do it. I also want a stent in my foodpipe instead of having endless endoscopys which they also refuse. I also want a valve like a  normal person has to stop food or acid coming up from the stomach making it one way again they refuse. I am now on sleeping pills called zopicione having got a new GP (the previous one refused), not something I like taking but using a feeding peg at night isnt conductive to sleep, and that makes all the difference. I do manage to sleep a four hour stretch something  I havent done for years and a noise does wake me up so they cant be that strong. 

hugg 1
Posted by

hi mate,  

 my dr put me on zopiclone to make me sleep [10 year ago,first time] then out of the blue, stopped them because,apparently they are very addictive.you yourself sound a bit fed up,,,well join the club,im still waiting on phone calls coming in but a friend on here told me to leave it a day or two then ring them,ho sorry seeker,im supposed to be in hospital on the 8 of july ,op date,but i need it confirming im as fed up as you mate ,,txt back when you chill and regroup bud, if this txt dunt make much sense ,bare with me its,just that huggs fed up seeker,,,keep in touch

  • hugg
hugg1
seeker1
Posted by

Side effects of zopiclone include headaches, dizziness and drowsiness. Many users report sleepwalking or performing other tasks whilst asleep, including driving and other activities which are extremely dangerous whilst intoxicated.

A lower dose of 3.75mg may be recommended to begin with if you're over 65 years old or have kidney or liver problems.

Taking a lower dose in these cases reduces the risk of excessive sleepiness and other side effects.

Common side effects are a metallic taste in your mouth, a dry mouth, and daytime sleepiness.

I have not yet noticed any side effects and dont take it every night, only when I am peg feeding. If you read my posts here and my blog you will see I am very careful about tablets for instance I dont take pain killers I rather suffer. I take these tablets very very reluctantly and If I notice the slightest side effect (bad one) I will stop immediately. My mouth anyway always has a bad  taste and I am sucking sweets instead of mouthwash for it so I cant know if this causes it. I read it is banned in the states but seems to be the best for sleeping. I am often 'sleepless' by day since I dont sleep much by night, again I cant tell if this makes it worse but I can live with it. These side effects dont seem to be too drastic and wouldnt change me. 

I am fed up that is true. The cancer is a life changing thing. Someone who hasnt had it has no idea what it is. Your life isnt worth living. You cant just sit back. There is always something wrong. Now my swallowing didnt work, that means it was difficult. I am often sick as well. I read on here about people getting better, I dont seem to. Each day is harder than the day before. My mouth muscles seem to be getting worse all the time. I have mentioned on here that I was over radiated. My doctor says everyone gets the same dose even though people are not the same. That cant be right. She says otherwise the cancer comes back although my mouth is far away from the voicebox. 

pixie76
Posted by

I'm sorry to read you're have a really hard time  x

Everybody reacts to radiotherapy differently, same as chemo. The same as everyone heals at different rates. 

Mine was base of tongue sarcoma. 

Imagine a light aimed at your voice box. That light is the rt and it has to go through your skin, muscle and tongue to get to it. That is why it is damaged. 

Chemo made me more ill with every dose I had. I was sick a lot, especially on the feed, I've lost 3stone in weight. 

Please try and be positive, true believer that this works, do not admit defeat. 

Sending you hugs and hope you begin to feel better soon. Xxx

seeker1
Posted by

I am not sure what you mean. I have no voicebox now since it was removed and why must a light go through the mouth if it can go through the skin. I once copied  part of a book on here by a doctor who himself had cancer, which makes all the difference. This was deleted by the site since although important and had likes from chris was not original. I have also lost weight and dont seem to be making it up since there is very little that I can eat and even what I can is often sicked out. It is not about admitting defeat but accepting ones fate and trying to make the best of it. This can only be done by reading everything one can about it. 

https://www.headandneck.org/ambassador-profiles/itzhak-brook/

 “Furthermore, I had to face new medical issues that emerged as a result of the treatment I had received and had to confront many psychological and social issues. Becoming a patient with a serious illness after practicing medicine for over 40 years allowed me to understand the hardship and difficulties that patients face in ways I could not have done before.”Since becoming a laryngectomee, Dr. Brook has devoted his efforts to improving head and neck cancer patient care, preventing medical errors, and educating head and neck cancer patients.

He has authored the books, My Voice, a Physician’s Personal Experience with Throat Cancer and The Laryngectomee Guide. The Guide has been translated into over 15 languages and is available free of charge.

As he writes no doctor can understand what we go through without having had cancer himself.