Hi all - my Mom has had oral cancer (squamous cell) for a little over 2 years now. Shes had technically 5 surgeries - 3 of them involved removing cancer. Her last two have been the biggest. Last year after surgery she was left with a hole in the roof of her mouth after a partial palatectomy/maxillectomy. She got a prosthesis but didnt wear it much because it caused a lot of pain. The dr's say she will probably always have the hole in the roof of her mouth.

Her most recent surgery was in January. They removed bone from her jaw and replaced it with a piece of her fibula bone from her leg. they removed all of her teeth on one side. they took a big piece of skin from her leg to try to cover where they placed the new bone but it didnt really attach. she obviously had the feeding tube put in and a tracheotomy. she still has the feeding tube but trach came out last month...probably should have left it in
they also installed a bar with 2 screws in the same place. recently it became infected. the dr kept telling us it was just infection and that it was normal. her skin on her cheek started to open up and created a small hole so that the infection 'stuff' could get out. again, they said this was okay. this went on for about a month. eventually the hole widened so much, the screw became completely visable. finally, they did a scan (i think she should have been doing them every month) and became concerned that it wasnt all just infection but that the cancer came back.

last wednesday she had a small surgery b/c they had to open her up in order to biopsy - she cant open her mouth wide enough. we were all hoping to god it was just infection but of course we have no luck, the cancer has returned for the 4th time in 2 years. we just have no words. im heartbroken. my heart literally feels so heavy. shes 59 years old. how many surgeries can one person have? she says shes will to go under theknife again. this time they think its moved to her tongue. i feel like her dr has been great through all of this but perhaps its time to pursue going to an actual cancer treatment hospital, such has the one in Texas or Maryland or NY. shes putting too much trust in this one surgeons hands and i feel like we need to explore other options. one person cant know everything. Shes been through SO much. She is so TOUGH. I feel like I would hide in the house and cry all of the time if I was her. The day after we found out cancer had returned, I awoke that morning to someone cutting the grass - I thought it was my stepdad but it was her. Out in the yard working like any other day. I just want to bring her some relief and peace. I want to bring her somewhere where we can receive the BEST care. Does anyone have any experience going to a cancer treatment center or know of anyone on this forum that i could talk to about it?

I know this is very long but I just need to vent and get it all out. Thanks for taking the time to read

Emily:
I don't know that much about that type of oral cancer, but just wanted you to know that there are others on this forum who do, and I'm sure as soon as they read your post, you'll be hearing from them. Christine is one person who I think has had similar surgeries; she is full of knowledge and as soon as she reads your post, I know you'll hear from her. I will pray for your Mom, and from what you've written, I think you should definitely take her to another cancer center, and others who answer your message will have names and places for your Mom to get the best treatment. Tell her to hang in there and never, never, never give up. Others have had multiple episodes and are still here to tell about them. God Bless.
julieann

Emily, God Bless You and your Mom. You are in my thoughts and prayers. I'm in Charlotte and Dr. Brennan, in Charlotte, is the one who FINALLY diagonsed my aunt's cancer after screwing around with doctors in Gastonia for 3 months. Her surgeon is Dr. Kamerer with Charlotte Eye Ear Nose and Throat. He is also over the oral cancer department at Carolinas Medical Center. Not sure where you are or where surgery was done.

Here are 2 brief articles I found on Kamerer and Brennan:

Kamerer Donald's Biography
Donald B. Kamerer, Jr., MD Additional Information:CHARLOTTE EYE EAR NOSE & THROAT ASSOCIATES EDUCATION:Undergraduate: Summa cum laude, Yale University, 1978 Medical School: Harvard Medical School, 1982.Internship: General surgery, Boston University Affiliated Surgical Program, 1983.Residency: Otolaryngology - Head and Neck Surgery, University of Pittsburgh, a program consistently mentioned as one of the finest in the nation, 1987.BOARD CERTIFICATION: American Board of Otolaryngology. He is a fellow of the American Academy of Otolaryngology - Head and Neck Surgery.MEMBERSHIPS: North Carolina Medical Society and the Mecklenburg Medical Society.MEDICAL STAFF: Presbyterian Hospital and Carolinas Medical Center. Dr. Kamerer currently serves as Chief of the Department of Otolaryngology - Head and Neck Surgery at Carolinas Medical Center and is the Surgical Director of the Multidisciplinary Clinic for Head and Neck Cancer at Carolinas Medical Center's Blumenthal Cancer Center, where he participates in research related to the multidisciplinary approach to head and neck cancer. He sometimes serves as a surgical representative for Presbyterian Hospital's Multidisciplinary Head and Neck Clinic.EXPERTISE: Evaluation and treatment of head and neck tumors, diseases of the salivary glands, thyroid and parathyroid disorders, skullbase surgery, transseptal surgery for pituitary tumors, voice disorders, and endoscopic sinus surgery.

Mike Brennan DDS, MHS

Research Interests: Pathophysiology and Management of Sj�gren�s Syndrome and Other Salivary Gland Diseases, Oral Mucositis and Other Oral Complications from Cancer Therapies, Dental Management Issues of Medically Complex Patients

Dr. Brennan received a Certificate in Oral Medicine at the National Institutes of Health (NIH) in Bethesda, Md., and a Masters of Health Science in Clinical Research from Duke University. Upon completion of his master's, Dr. Brennan joined the Department of Oral Medicine at Carolinas Medical Center in June 2000. He is currently the department�s Associate Chairman, Oral Medicine Residency Director, and Director of the Sj�gren�s Syndrome and Salivary Disorders Center. To date, he has written more than 50 peer-reviewed articles and book chapters.

In the field of Sj�gren�s syndrome, there are four ongoing and recent studies, two of which are NIH funded. The two NIH studies evaluate the genetics and proteomics of primary Sj�gren�s syndrome while the third is a randomized-controlled trial, (RCT) to evaluate the role of hypnosis in patients diagnosed with primary and secondary Sj�gren�s syndrome. The final study is a recent multi-center RCT, which evaluates a new topical agent for Sj�gren�s syndrome and was completed at Carolinas Medical Center with promising results.

Dr. Brennan is additionally the principal investigator at Carolinas Medical Center for a multi-center study to evaluate the impact of oral mucositis in a wide range of cancer therapies. He also holds the following positions:

Co-Chairman of the Oral Care Study Group which is part of Multinational Association of Supportive Care in Cancer/International Society of Oral Oncology (MASCC/ISOO)
Project Organizer of the project �Oral Care Study Group Systematic Review� with over 70 international participants. The primary goals of this project include an identification of the prevalence/incidence of oral complications (i.e. xerostomia, dysphagia, pain, osteoradionecrosis, bisphosphonate-associated osteonecrosis, dysgeusia, fungal, viral and dental/periodontal disease). Quality of life, economic impact and management recommendations are also key components of this project.
Along with research initiatives evaluating the patient impact of oral complications, Dr. Brennan has both recognized and ongoing research evaluating the mechanisms associated with oral mucositis. He has already evaluated gene expression changes in epithelial tissue associated with chemotherapy in leukemic patients. Results from this study and an additional ongoing study evaluating gene expression changes in archival tissue samples from patients treated with chemotherapy at various time points in time, will help clarify the pathophysiology of mucositis and identify potential future therapeutic options for oncology patients in the dose-limiting complication of mucositis.

Recent Publications

Brennan MT, Runyon MS, Batts JJ, Fox PC, Kent ML, Cox TL, H. Norton HJ, Lockhart PB. Odontogenic signs and symptoms as predictors of odontogenic infection: A clinical trial. J Am Dent Assoc 2006; 137: 62-66. [PMID: 16457000]

Brennan MT, von Bultzingslowen I, Schubert MM, Keefe D. Alimentary mucositis: putting the guidelines into practice. Support Care Cancer 2006; 14: 573-579. [PMID: 16622650]

Brennan MT, Wynn RL, Miller CS. Aspirin and bleeding in dentistry: an update and recommendations. Oral Surg Oral Med Oral Pathol Oral Radiol Endod 2007; 104: 316-323 [PMID: 17618144]

Brennan MT, Kent ML, Fox PC, Norton HJ, Lockhart PB. The impact of oral disease and nonsurgical treatment on bacteremia in children. J Am Dent Assoc 2007; 138: 80-85. [PMID: 17197406]

Brennan MT, Woo SB, Lockhart PB. Dental treatment planning and management in the

Emily,

Get her to a CCC (Comprehensive Cancer Center) ASAP. A multi-disciplinary tumor board of cancer specialists must evaluate her.

It looks like she has not received any chemo or radiation therapy. I would assume she would have gotten advice on these options from the beginning. Surgery is not the only answer.

Kelly, she has received radiation. We did that last year after her 2nd surgery. We think that it came back the third time in the bone because of the radiation.
This time the surgeon mentioned doing chemo and another surgery but that just a brief discussion after he did the biopsy last week. We didnt get to discuss much. We're scheduled for a dr visit with him next Monday. I plan on at this time telling him we want to explore going to a cancer center. If he referred us, would this speed up the 'entry' process?

penners, thank you for the info. her surgery was done in Greenville, NC. charlotte is not too far away - maybe 4 hours.

we're not too interested in just switching drs though. she actually has an awesome surgeon, he came highly recommended but i feel like we need a TEAM of people to help her. here is a link to her current surgeon
camnitz

Yes,

Having a cooperative doctor should make those wheels turn faster (just from a records point of view). I had two CCC's review my case. Although I was treated at a facility near my home, I was prepared to go wherever I needed to go to get the right treatment.

Both CCC's concurred with my local treatment plan, and that may be the case with your Mom and your local physician, but you want to know that this is the best treatment option available. A CCC is the only place to find that out.

Im not quite sure what you mean by a CCC? I know that her current surgeon is head of the division of otolaryngology. he meets quite often with a team of other surgeons and he discusses my moms 'case' with them. theyve all decided together what the best plan was each time we had a surgery and when he decided to do radiation.

thank you so much for taking the time to talk to me. its nice to get someone elses opinion and ideas.

Emily,

I mean a comprehensive cancer center acording to the National Institute of Health NIH.

These are the best of the best and there is one at Duke right there in NC. Click on the link below for a list.
Cancer Center List

Your doctor should be well aware of this designation and should give you no trouble about getting second opinions from any CCC.

It is unlikely that the radiation would have caused any additional cancer. Very high doses of radiation CAN cause cancer, but it takes about ten years to occur after the treatment application of radiation, (72 plus grays of radiation at least).

It is likely that if you had gone to a CCC at the first occurrence, she would have had radiation and chemo right from the get go, with surgery afterwards when the tumor is de-bulked or reduced in size by the other treatments. The National Comprehensive Cancer Network, which is a group of the biggest NCI designated cancer centers in the US, publishes every 6 months to a year, the updated best working treatment protocols they are using. The purpose of this is so that smaller institutions who have less experience, see fewer patients etc. can benefit from what the big guys have found to work the best for different stages of oral and other types of cancers. Currently these are considered the standards of care for treatment. You can view the current recommendations on the OCF web site in the treatment section.