Palate cancer

Hi Fairy

I've just found this site. I had my right upper jaw removed due to SCC 5 weeks ago. I received ths diagnosis at the beginning of December and it turned my world upside down. I had the op at the end of December and had a fixed obturator. I went back after 3 weeks to have a removable one put in and finding it very difficult to talk. This one isn't a good fit and have been told it'll be about 6 mths before I get the final version.

Any tips, advice or chit chat would be welcome. I'm still getting my head round all this.

This is a very hard time indeed ... are you able to eat? Did you need Radiation? Whereabouts are u living? 

It certainly is a difficult time.  I can eat but only soft foods and tiny bits as I can't open my mouth much.  Luckily I didn't need radiotherapy.  I live in the north east. How are you getting on? Where abouts are you?

I live in Karachi, Pakistan but got my treatment done in London. You re lucky u didn’t need Radiation. That just makes things ten times worse. My mouth shut down as well and I was on a feeding tube as well for a while. Lost 20 lbs but now with the new final obturator, am eating better but there has been a little pain for the last week or so. Did u need chemo?

If you want to chit chat on watsapp that would be easier

Hi

I didn't need any treatment, thankfully. I was able to eat but only very soft foods and also had nose tube for about a week. I've lost about a stone since I got my diagnosis, particularly because I was so upset from the results and partly due to the op. I'm eating a little better and have fortisips as a supplement.

Yes I'd be happy to chat on WhatsApp.

What all was removed?

My upper right jaw which included 5 teeth and half of roof of mouth. I have a removable obturator but it's uncomfortable. How are you getting on with yours?

I had ten teeth removed and most of my palate removed. I have a removable one out since November but it’s not the most comfortable thing. I guess this will be a constant thing. I had a fixed one for about a year cause my mouth opening was too small after radiation. I had to do certain exercises to increase the opening before they could make a removable one.

Mine doesn't fit to good and go back to the dental hospital to have it tweaked. They said it could be about 6 months before final one but doubt it will be much better than what I've got. I can eat ok but I can't talk very good. I'm using a therabite to help open my mouth further but its very slow progress. Another woman had the same op and had radiotherapy and her mouth doesn't open much. She still has fixed obturator, since October, she doesn't know if they'll do a removable one or reconstruction. I wasnt given that option. Does your mouth open ok now and have you got your final one?

I have gotten my final one but my mouth opening still isn’t great. I need to continue doing stick exercises three times a day to open the mouth. Been doing them for a year now. I guess radiation worsens this situation. I have gotten my final one but i had a fixed one for a year cos my mouth Opening wasn’t big enough. Wats your name and how old are u?

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Are u in London?

Hi, I sent you a private messages. I live in north east England.

Fairy posted:

Hi everyone I’m a 44 year old female who was diagnosed with squamous cell carcinoma of the palate and sinus.  It was stage 4 but was luckily contained.  I had my right sinus, 90% of top jaw, 10 teeth and 90% of my palate removed.  I got 6 weeks of radiation and have an obturator.  I am now in the process of making my final obturator.  Is there anyone with a similar case? 

Hi @Fairy, it must be really hard for you to cope up with the pain of treatments. Does it hurt while eating? I hope you'll get better soon and will be able to eat like before. Take care of yourself & be positive, keep fighting.

Lots of love & Best wishes!