Hello to all,

I've just registered today for the OCF and hope to be able to learn a bit. I've had throat CA for over two years now.

My biggest problem currently is excess mucus, night coughs, no saliva, and am NPO, just had a hospitalization due to aspiration pneumonia, requiring a PEG tube placement.

I hope to share also and help others when able.

My best regards to all affected by this problem in any way.

Hi and Welcome, June 2022 I too was diagnosed with 2 kinds of oral cancer , scc on the left side tongue and hpv related on the tonsil and in the left node of 1 . I have a long way to go but I also have come along ways . Recovery feels so slow sometimes. I had a hemiglossectomy from forearm skin to rebuild tongue. 12 hour procedure . Had 33 Rads and 7 chemo sessions . Taste is barely coming back now but is improving , no saliva yet but becomes a problem during exercises and at night . Taking Pilocarpine but doesn't really work. High Protein shakes I make & drink 4 per day , eat some soft foods in-between. A lot of the side effect have past but there still alot left. So far I'm here today and optimistic in the future .

I am sitting here trying to think of all the things I wished I had asked 19 years ago!

The basics are a good place to start
1). What exactly will you be doing
2) will you be doing a free flap (involves moving tissue etc into your mouth from a limb then covering that spot with a graft. (And no - I have never figured out why it is called a “free” flap!)
3). How often after the surgery will I see you (Surgeon)
4). What painkillers will I be given and for how long.
5) Do you have a list of things I can and cannot do post surgery - ie brushing teeth or showering, etc
6) who is my GO TO PERSON for questions
7) what do you recommend I use to communicate (Boogy Board, Pen/Paper - Whiteboard ?
8). Will I have a tracheostomy and if so for how long (I was not prepared for this one!)
9). How soon do I see the speech language pathologist?
10) when will the FULL post SURGERY pathology be ready to be discussed?
11). How long will I be in hospital
12). How much help will I need at home?
13). What can I do to get ready for the surgery ?
14). Will my tumour be HPV “typed”
15). What is the clinical staging of my cancer? I understand that may change after final pathology
16). What tests will be required pre snd post surgery
And so many more. I am sure others will chime in.

Donna. (Pandora99).