I found this site a while back and have been reading but I guess it's time to actually join. My daughter who is 33 this week was originally diagnosed in September 2006 with SCC of the upper maxillary region and had first surgery early October that year to remove 7 teeth upper maxillary as well as bone, as there was invasion to the bone then. No radiation prescribed at the time as the Head and Neck Surgeon did not recommend it for her then. She has a obdurator prosthetic now.

We made it 2 years and 3 months with clear CT scans and follow up. Last month she went back to her doctor to have a small node under her prosthetic looked at. Biopsied and it came back as dysplasia so laser surgery was performed about 3 weeks ago. Surgeon took a lot more tissue then was planned and pathology came back that there was cancer there, so here we go with recurrence. After laser surgery had another biopsy of a second area and it came back as cancer. So now we are getting ready for our second surgery to remove the entire upper right jaw and the hole into the roof of her mouth will be exponentially larger. Will be planning on a new obdurator to begin with. I really fear the flap surgery even for reconstruction because my daughter is pretty small. She only weighs 90 pounds and I don't believe she would do well recovering but who knows what God has planned for us. Just rolling with the punches. Waiting on new CT scan and visits with remainder of surgical team, prosthedontist, etc. Any one have any other information that may have gone through this type of surgery. Need all I can get.

Bonnie,

Welcome to OCF and the wonderful folks on this board who will be a great support to you.

Where is your daughter being seen? At this stage of the game, I think I would want an opinion from a team at a Comprehensive Cancer Center, not just a surgeon. She needs a multidisciplinary approach to this...its time to bring in the big guns.

Just a suggestion. You can fill in all your/her pertinent info in your signature line so you don't have to repeat yourself with each post. Just go to "My Stuff" then profile to do that.

Welcome again, Deb

Hi Deb,

My daughter is being seen by Dr. Bryan Bell in Portland Oregon at the Head and Neck Center. He is bringing in the team, that's why she has appointments over the next couple of weeks and then we go back to see him. She had a team the first surgery too. I will try and fill in the information later. Thanks for the response.

Bonnie

Bonnie,

I see that no one else has responded so I am bumping this to the top...sometimes things get buried and I don't want you to think that no one else cares.

Anyone else care to comment?? Many here have had surgery so they should give you imput.

I guess my only comment is: Is this facility where your daughter is being seen a NCI or qualified CCC? Sorry to beat this to death but it is so important!

Deb

Bonnie,

The only things that are similar between your daughter and I is that we are both very small. I am only 5 ft and weigh 97 lbs. I was heavier pre-surgery, but I have maintained this weight since Oct so it may be my new weight. I take vitamins and watch my nutrition and so far so good. Encourage your daughter to take in as much as she can pre surgery/treatment. Have they spoken with you about a PEG tube? I had one installed before I started chemo prior to my surgery and it has been a blessing to help me to keep up my nutrition even though I try to take in as much as I can by mouth.

My cancer was in the floor of my mouth and my recurrence was in my tongue, but they did remove my left mandible and I have a flap replacing my tongue. They so far have been successful. It is quite an adjustment, but as I am adjusting I am feeling more comfortable trying different foods, speaking and interacting with folks outside of the cyber world.

Good luck to you and your daughter. She is lucky to have you and you have found a wonderful resource here for support and information.

Patty

Hi Bonnie,

Welcome to OCF. As Patty stated this is a wonderful site with a lot of wonderful information. My treatment has been much different from your daughters so I'm afraid I cannot be of much help. I can to realte to numerous surgeries and how crappy that is though.

I'm sorry you have to go through recurrence after you have been through so much already. I'm sure that was devistaing news.

One thing I would suggest is a book for your daughter that I have found to be awesome. She is about my age so she may enjoy it. It's called "Crazy Sexy Cancer Tips" and there is another one "Crazy Sexy Cancer Survivor" The author is Kris Carr and she was diagnosed with a rare vascular cancer. She is late 20's early 30's when diagnosed also. I cannot say enough about the books and how I love them. I find them to be very inspiring.

Good luck to you.
Suzanne