just diagnosed, what happens next?

Hi, Im new to the group. 

I had a branchial cyst appear end on july this year and it was removed October 11th.  I was called in last week to be told that the cyst contained squamous cells. 

Had PET scan on Thursday. I'm so so scared, how long do I have to wait? I don't know what happens next. 

Sorry I have no one else to talk to. I'm lying in bed trying to sleep but have all this constantly in my head. 

I'm ok if I'm kept busy but once im alone... I go to pieces. 

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

  • 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

  • Brilliant. Such good news. 

  • 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. 

  • 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. 

  • 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. 

  • 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.

  • 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. 

  • 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

  • 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.