Hi, it is Jordan's Mom-Bailey. I had found this site early in her treatment and it took her a lil' while to want to come, but loved it once here. We found Miss Kate here and the 2 of them have bonded miraculously. Thanks to the site. 'Jordan'/Christa was diagnosed 12/29/06 and underwent IMRT 35 treatments. Chemo w/ Cisplatin and Erbotux. The Drs. felt they had it, well not quite. After her Esophagus was perforated during and EGD to remove her peg and dilate her esophagus the tumor was found to be there still. She suffered and aspiration pneumonia, needed to recover, a scare of mets on Pet which was ultimately the pneumonia. Had Surgery On Mon. 7/30/07 to resect her tongue and reconstruct. Initiallly had trach, then a simple only few node removal all looking fine/clean, but upon beginning resection found microcsopic tumor on Carotid artery. Surgeon stopped without any resection, told us chemo only option. We need further opinions. We would like to travel to MD ANDERSON preferably but am wonddering if anyone here has had similar story or knows Agressive surgeons there. Please, respond ASAP.
I think she will be going home in next few days and are willing to begin travel soon. I have begun the New Patient admission at MD Anderson.
We are from outside Chicago around Rockford, Ill.
She also had a surgical consult at U. of Chicago in June after re-discovering tumor. They seem to be familiar with carotid resection after speaking to our surgeons nurse there today.....
ANY input. She is the 31 y/o Mom of a 2 yr. old that Misskate speaks of in her recent post in her cancer blog. Help us........
Since negative nodes, it just seems it still should be resected.....not just chemo......

Hi Jordon's Mom - I'm so glad you both found this site and also that your daughter found Miss Kate, too. I've kept up with Miss Kate's blog, and the friendship that has developed between the two of them is so gratifying to see. It is so good that you are getting other opinions and MD Anderson is certainly one of the best! My son's diagnosis was quite different from Jordon's so I cannot offer any opinions there, but I am sure you will hear from others on this site. I know how heart wrenching it is to have to see one's own child go thru something so horrific but there are lots of wonderful, compassionate people here and a tremendous wealth of information available. Sounds like you are on the right tract with the procedures you've taken so far. Stay positive!

Hi Jordan's Mom,

I've been a lurker, never posted before. My son is being treated at University of Chicago. His case is different from your daughter's but he's young too (just turned 22) so I know how hard it is to be the mom in something like this. Two doctors told us our son's tumor couldn't be removed by surgery before we were finally referred to U of C. On 6/13 he had a tongue resection and nodes removed in neck. The nodes were clear, the tumor's gone, the margins are ... okay.

We're hopeful and happy and we owe that to the doctors at U of C. They were wonderful.

Matt's Mom

Hi Jordan's Mom - just wanted to say that although my cancer was not as advanced as your daughter's, after researching best places for treatment I decided on MD Anderson - based on it's top reputation for treating oral cancer, plus it was simply easier for me to get to than Sloan Kettering, or Johns Hopkins, and I have family in Houston. I have never regretted my decision for one single minute, even though traveling to get treatment presents challenges. I think all of the surgeons there are top-rated, Jeffrey Meyers did my surgery but I have also heard great things about Ann Gillenwater - take a look at the website, if you haven't already - it shows a detailed bio of each MD and their area of interest and specialty. When I did my self-referral I was asked if there was a specific surgeon I wanted to see. I am currently being seen by one of the medical oncologists as I am in a clinical trail - but I have to say that everyone there has been top notch.

Keep perservering - and my hopes and prayers are with you and your daughter.

Hi Jordan's Mom,

I just sent you a private message. Like Ginny, we also decided on MDACC. My husband's surgeon was also Dr. Myers. Dr. Gillenwater is the surgeon of a friend we met in Houston and he is very pleased with her. They are all great. I cannot say enough good about MDACC.

AmyC.

Dear Matt's Mom- glad you are amongst us now- I've always felt this was a safety net for me.

Bailey, we know you are very frightened for Christa. Going to MDA sounds like a good plan, at the very least, you will get more opinions from very experienced Docs. You are a great advocate-stay strong and try to watch after for yourself also. Amy in the Ozarks

Hi, Bailey,

I'm so sorry that you and Jordan are having to search for treatment at such a difficult time following the surgical attempt. I don't have a specific recommendation as my husband's cancer originated in the tonsils but we have been very happy with Johns Hopkins. I'm writing because when we were doing our search, Sloan-Kettering had a detailed case of a 22-year-old woman who had part of her tongue removed, a prosthetic device eventually placed in her palate, etc. It was a case used to illustrate their team approach to treatment and to promoting quality of life. It was impressive so you might want to at least go to their website (can't rememember if it was on the general website or the head and neck cancer clinic website.

Good luck !