Newby first post

Hello Dawn. We’re here to help and guide you through this process. I’m in my 3rd month post treatment with the same diagnoses you had.  I only had chemo and radiation.  I hope you heal quickly  

Thanks DesRoss - much appreciated. I had a feeding tube in until today but determined to have it removed before I left hospital.  Thankfully I can eat. Positive mental attitude.

Hi Dawn. Welcome but sorry to see you here. 
The Pathos trial involves having either five or six weeks radiotherapy after surgery. This is randomised by computer, unless you fall in a group which needs no further treatment of course. 
Dawn, don’t panic. The treatment is pretty awful but it’s over in a few weeks and has a 90% chance of cure. 
I couldn’t have surgery but the RT did the job and I’m here alive and well five years later 

Stay with us. Youll have a lot of questions and there is always somebody here to talk to. 

Hi Dawn I had chemo snd radiotherapy won’t fear the radiotherapy it’s hard but it’s doable.  The pathos trial  is a randomised trial am sure  consultant will explain. Stick with us we’re all happy to help. I did it so can you I’m almost 6 years since diagnosis.please don’t be scared. Am sure others will pop on who have had neck dissection with tips. 
Hazel x

Thanks Dani - much appreciated.

Thanks Hazel - much appreciated

Good evening Dawn, well done in getting through the surgery, when they operated on me they also removed more lymph nodes than they thought, sometimes they do not know what they will find until they start the operations, i know what you mean by Frankenstein with all the staples and stitches, i hope your neck is healing ok you might find the scar becomes tight as the healing continues. Great you have the feeding tube removed, keep up the positive mental attitude. I had radio and chemo but in the floor of my mouth area and did not find it that bad but we are all different with side effects and speed of recovery, as Hazel said if she can do it anyone can along with plenty more on this forum. Wishing you all the best the PATHOS, its worth asking again, take care.

                                                                                                                    Chris x

Hi Dawn, welcome, stick with us. We know how you feel, it is very scary, the treatment is very challenging, but it does give very high cure rates. You will get through it don't worry; We will all be here to help you. Ask any and as many questions you want, someone will always answer.

Ray. 

Hi Dawn. I had the Full Monty of tonsillectomy, neck dissection and chemoradiation and am living life normally and happily just over three years later. It’s tough but we all get through it so do take heart. Lean on people in here, listen to what they say and concentrate on keeping well throughout treatment. The overwhelming likelihood is that some day this will just be a distant memory for you. Wishing you the very best. M

Hi Dawn

Not quite the same, but similar. I had T2 HPV+ve tonsil cancer diagnosed 11 months ago. Tonsillectomy end of May. They didn't take any nodes though but didn't get margins. 

Radio 5x/week + chemo (carboplatin) 1x/week for 6 weeks starting end July. They put in a RIG tube a week or so before which was a night in hospital and a few days discomfort. Dealing with the tube is straightforward after a few days and you are used to it.

Brief summary: first week fine. Second week paracetamol. Third week paracetamol + codeine. Fourth week morphine. Ate fairly normally to this stage but made an effort to eat a lot to maintain weight. Weeks 5 and 6 were not easy - mouth ulcers, skin on neck like severe sunburn, eating v difficult. I was drinking Fortisips by this stage as solid food was difficult. The chemo was fine - zero side effects apart from a cold arm while it went in and insomnia from the dexamethasone. Weight stable throughout.

Finished on a Friday 1 Sept. Monday back in hospital with neutropenia. I felt fine after 24h.

Two tough weeks then it started getting better. Stopped the morphine after about 3 weeks, the codeine a week later and nothing at all for pain a week after that. Only used the fortisips for a month and always orally. Did use the tube for paracetamol (soluble paracetamol hurt). Slept a lot - 8/9 h at night, 2 in the afternoon. Watched a lot of mindless tv.

Pain came back mid Nov - paracetamol for 2 months. At this stage felt 'stuck' - I wasn't feeling better and was impatient. PET scan mid January, follow up MRI a week later, registrar told me all was fine early Feb. This was a real turning point for me - largely I suspect psychological. Back to work part time, taste returned, started getting hungry again, felt 'alive'.

In summary - a month or so was tough but manageable. Another 5 months or so was quite uncomfortable. Now, 7 months. after finishing treatment, mouth is dry so diet is limited but otherwise I'm fine. And hoping it stays that way:)

all the best