I am new on the web site and forum. I am new to being diagnoised with cancer. I have looked at many of the topics discussed and have not found any that discusses this type of cancer. I was wondering if anyone else has had an infrastructure maxillectomy and now have to wear the prosthesis (obtruator). Do you eventually adjust? Does the pain subside? Lots of questions for someone who has been here.

Sharon,

I have emailed Colleen (August, screen name). She will get in touch with you. She had a partial maxillectomy and she wears an obturator.

Jerry

Hi, Sharon.

Jerry is right. I have had a partial maxillectomy.....lost five teeth (would have been six if I had still had a wisdom tooth on that side.) I am fortunate to still have all four of my incisors. May I suggest that you "search" for my past posts, and I will be more than happy to answer ANY question that you may have. Feel free to email me. I'll send you my email addy. I have lots to say....and I'm doing fine. I see that your surgery is very new to you. I am 3 1/2 years out of surgery, and I've learned a LOT. You're right: There aren't many people with this problem on the forum, so I know how you feel. I had so many questions and had nobody to ask, and very little support from my surgeon. I didn't know about this forum. I'm glad you wrote, and I'm glad to help. I've posted a lot in the past, and so go and search for "August" and read some of my past posts. I don't come to the forum every day, and though I am a believer in posting here, since someone's post might help someone else, we might correspond by email also. We'll figure it out! I know you're miserable now....but yes, it does get better. You're not even totally healed yet. I teach, and sing, and eat absolutely anything...and liquids no longer comes out my nose! XOX--Colleen

Hi, Sharon -

I, too, had a maxillectomy/palatectomy last May, and radiation and chemo after that. I'm almost six weeks out of treatment now. The obturator is something you'll get used to, and the pain will eventually subside, but all of this takes time -- maybe more time than you had planned on! I'm just getting to the point where my radiation site is not painful anymore, and the obturator is becoming second-nature. At first, food and drink all came out my nose, but with adjustments by the prosthodontist and time, that has pretty much ended now. The daily care of the obturator and surgical site is a chore, but that, too, becomes habit. Take care of yourself -- drink plenty of Ensure or Boost, make yourself smoothies (I do one with Boost, frozen bananas, yogurt, oatmeal, and protein powder!), and rest assured that with time you will heal and grow used to the obturator. I'm happy to answer any questions or just listen if you want to vent! Do look up Colleen's posts ("August") -- she was incredibly supportive and helpful to me in the first couple of months after my surgery. You have much support here -- keep posting whenever you need a connection!

Hang in there!

Hey, Chris.....I'm glad to hear that you are doing so well. And I'm thankful that your treatments are all finished, and now you can get back to daily living. Since you had radiation and chemo, your situation is likely more similar to Sharon's, and your timing is nearly identical. You are just enough ahead of her to be real help. Between the two of us, we should be able to answer most questions! .....can't fix it, but can help things go better.

I'll check the forum more often from now on, so I can stay up to date on both of you!

XO--Colleen

Hi, Colleen! Great to hear from you again -- you really were so helpful to me through those hard months. Yep, I'm done with treatments -- still healing (feeling impatient about it sometimes!) but ever so much better than I was only three weeks ago. I think of you often.

Sharon, I really am pretty close to you in terms of treatment time and type; I've been there, and it's do-able! Not easy, but worth it in the end! Good luck finishing up your radiation treatments, and don't hesitate to ask us questions or just unload when you need to.

Sharon - One more thing I forgot to mention: be sure you are doing stretching exercises every day for your jaw to prevent/help with trismus. If your prosthodontist hasn't given you any, I'd be happy to tell you what I do. Super important!

Best wishes -

Chris - Thanks for that reminder about stretching exercises. My surgeon or prosthodontist didn't initally give me anything. When I saw my oncologist for the first time he became concerned. I was only able to open my mouth about 14cm. He immediately order a thera-bite and I began exercises 3 -4 times a day. I made good progress up to about 22cm, and then got stuck! I can't seem to do more. Any other suggests? They suggested doing it more often but when you are in pain anyway it is hard to subject yourself to more pain.

Thanks Colleen and Chris. I will read with interest the former post in order to see if some of my questions have already been discussed. I do feel like I have a dozen questions but will try to prioritize and take them one at a time.

Sharon -

I know what you mean about having to deal with the pain and try to do your exercises at the same time! I went a bit more gently through the most painful period, and stretched a little less for the worst few days. Even now, it hurts some when I get to the widest opening part (and you can only push your muscles to a certain point; they fight back after that). I do them probably five times a day (less on work days -- I'm a teacher), 10-20 times for a count of 7 each. No need to really HURT yourself; just take your pain meds, and do the counting patiently, and you will be doing yourself some good!

Don't worry about asking too many questions -- we're all on the same team and happy to help out!