Hello All,

Would really appreciate hearing from any of you who can tell me what to expect life to be like after the tonsillar cancer surgery. I went through radiation 4 years back and now here we go again but have been told that because the tissue remembers the radiation if attempted again it would just blast a hole through the tissue, the laser man said he could not help me at my stage so I will be left with having to go for the surgery where they will take tissue from the leg to rebuild the palate etc. The thing is, what is life to be like after this procedure-How disabling and disfiguring is it? How long till I can speak properly again if ever-will I live or just exist after this noise. Not scared of the surgery just scared about what my life will be like afterwards. Any replies would really mean alot. Thanks for your time. Jerry

Hi Jerryd.
I did not have the same surgery but in 1998 i had a right neck disection,part of my toungue removed and lymph nodes removed.followed by skin grafted from my forearm,
The graft did not work so they moved my pec muscle into my throat to form my new toungue, followed by 6 weeks rt

Its not easy had to learn to speak and eat again but once i was home things progressed rapidly.

we tried to live as normal as possible.

it did not stop us going out or having a social life.

returned to work after 5.5 Months gained a number of promotions and alough i thought my speech was not perfect ive had to do presentations and talks and was understood i just talk more slowly.

we have been on holidays abroad and at home many times.

Things do get to being normal and there is light at the end of the tunnel

Let us know how you are progressing and can contact us for further information or just to chat
Regards
David and Susan

Hi jerryd

Sorry to hear your news.

I was diagnosed with cancer to the right tonsil last July with a secondary to one of the lympf nodes in my neck.

Treatment was surgery to remove the tumour, replacement with a flap from my forearm, radical disection of my neck & removal of all my lympf nodes on the RHS. Then 3 weeks of recovery from the surgery, followed by 6 weeks of daily radiotherapy & 2 chemotherapy sessions.

Surgery lasted 8 hours, spent the night in intensive care then back to a general ward. Not much pain as they had the medication well balanced, but a fair degree of discomfort due to the large number of drips, drains etc that I was attached to. Initially breathing with a tracky (hence no talking for 2 days - have a pen & large pad of paper woth you!) & being fed vial a nasal tube.

Things got better quite quickly, various tubes removed on a daily basis; drinking & food introduced carefully.

Released from hospital after 8 days & felt pretty good within a week of that.

Unfortunately my flap came undone down one side soon after going home, but it was decided not to repair it until after my radiotherapy course. Although now repaired OK it doesn't work too well for making some sounds which makes my speech difficult to understand at times. However it worked fine before it came undone, so I'm sure you stand every chance of your speech being OK.

Dear David and Susan,
Sorry I have taken so long to say thank you for your message regarding your experience with surgery and all. That was very kind of you to have taken the time to write. It seems like we will be going through a bit of a different procedure as they want to remove and rebuild the back top part of the palate and the upper right jaw bone-its a real bitch as I have been working in the training department for an American Oil company and 3/4 of my job is either giving presentations or teaching-been at this kind of work for the past 15 years and it is going to be my ability to communicate that has really got me down but I'm a fighter and will just do the best that I can to regain some form of normality. The future part of my question really has to do with what I will be capable of doing in the near future-I flew back to the Gulf region after being diagnosed to honour my contract which will be completed in a couple of weeks then will bite the bullet and go for the surgery-then start on a new career search-so only time will tell. Hope you are doing well, your email was really positive and I'm sure that kind of attitude has had more beneficial results than you ever would have guessed-take care and thanks again.Best Regards, Jerryd

As you are in Canada jerry can i suggest you also check in with The USA based Oral Cancer Foundation Forum.There are many members there who have had exactly the same surgery you are going to be undertaking and i am sure they will be happy to pass on their experiences.I belong to both groups and find the balance of both to be very helpful and informative.