1. < Head & Neck Cancer

What is your quality of life after a partial maxillectomy?

Posted by coquest23 @coquest23, Dec 21, 2023

Has your quality of life improved or declined after having a partial maxillectomy? If you had to make the choice again, would you do it? What is the hardest thing you've had to live with post-surgery? Making a decision to have or not have this surgery seems like a lose/lose choice. Please share your thoughts and experience.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

karey0326 | @karey0326 | Dec 27, 2023
In reply to @rosie100 "I have lots of trouble eating and swallowing. I will have a swallow test on January..." + (show)
@rosie100

I have lots of trouble eating and swallowing. I will have a swallow test on January 4. I had one once before and was on. Before chemo and radiation. Now is harder to swallow. Will this get any better? I can't keep losing weight and I am afraid of stomach tube. So are my adult children. I look at people eating the big mouthfuls of things I love to eat! Help! Will this get better. Will this cancer go away.

Jump to this post

I went through the same or similar surgery. Two weeks into radiation, I couldn’t eat anything. I lived on Boost rich chocolate 360 calories each. To keep my calorie count up, I drank 4-5 a day. It was the only flavor I could tolerate, and I tried others. It depends on what flavor tastes good to you. My surgeon and oncologist said you can live on them, as they have everything you need. I did not need a feeding tube. You won’t either if you can get enough calories. You will get better. It’s a very slow process but it will eventually go away. As you start eating more food, you can decrease the number of Boost you drink. I could eat flavored cream of wheat, fluffy scrambled eggs, applesauce, ice cream, smoothies with anything in them that sounded good-especially peanut butter in my smoothie-extra calories. I couldn’t tolerate coffee for a long time but I could drink tea with honey. I kept a calorie count and it worked. Don’t get discouraged, please. Try to keep yourself busy so you don’t think about it all the time. I live in Florida so I would go outside and work with flowers and other plants as much as I could. It gave me a more positive attitude, which I believe, helps with healing. I hope you have something that you can do that will help you.

REPLY
coquest23 | @coquest23 | Dec 28, 2023

Hi Karey,
Thank you for this encouragement. Your comments are very helpful!

REPLY
kathyheidt | @kathyheidt | Feb 2 7:04pm
In reply to @nnurse "What joylondon said is mostly true in my case. An obturator aids in speaking and swallowing...." + (show)
@nnurse

What joylondon said is mostly true in my case. An obturator aids in speaking and swallowing. You can still speak and swallow, but without a hard palate or with a partial hard palate speech has a nasal quality to it, swallowing liquids can leak into the nose since there is an open or partial opening into the nose/ nasal cavity. An obturator has an artificial hard palate can contain the missing teeth and maxilla.( jaw)Breathing is NOT changed or affected with one. You asked about quality of life. Thats a hard question because people define QOL differently. Yes, my life has changed. I had radiation after surgery and i think that decision created the most problems. Although i followed the correct instruction i still developed trismus and the cancer returned later in my neck. ( neck) dissection)So radiation was considered a failure. I now suffer from fibrosis, pain and stiffness in my neck much worse then what my doctors told me. Would i have radiation again knowing what i do now? No. I think quality of life is what you make it. I cannot eat normally, talk normally without my obturator, always carry water with me for dry mouth, pain meds for neck and jaw pain,, hearing loss from radiation,,requiring hearing aids, etc. that has been 3 hears ago but my life is filled with joy. I am alive and have adjusted to my new normal. I think it is important that you have on your team a qualified surgeon oncologist speech therapist, radiation oncologist, and physical therapist. Its a plus to have a cancer rehab program specialized in head and neck cancer in your area. Therapies should start immediately after surgery and THROUGHOUT your recovery and for years after if needed. Oh yes, a prosthodontist or maxillofacial,specialist with knowledge and experience with an obturator is essential. In my opinion, general dentists do not have the training to manage your prosthesis.

Jump to this post

Thank you so much for all the insight do you wish you did a flap versus an orbutrator

REPLY
2ndjourney | @2ndjourney | Feb 5 7:14am

Thank you to all who contributed to this article. I am presently going to be scheduled for surgery for very similar cancer removal...metastatic renal cell cancer on maxillary jaw (small section), partly in sinus. I was offered total reconstructive surgery or the obturator. After reading everyone's experiences, I'm glad (???) I chose the reconstruction. I hope I'll have a better outcome with it. They (MSK) said I'll be "finished" after surgery (7 in hospital, surgery 6hrs), no cancer left, no follow-ups. Everything done during surgery....partial reconstruct of maxilla, teeth, cheekbone reconstructed.
I'm praying for a good outcome and I pray that you all continue to conquer these obstacles in our "new normal". Thank you again for the info and I'll be updating after my surgery.

REPLY
View MoreView Less
Please sign in or register to post a reply.