As most frequently used on the OCF message boards, the term CCC (comprehensive cancer center) means that the facility uses a team approach to dealing with an individual case, bringing the knowledge and experience from a variety of specialties to each treatment plan -- a "comprehensive" approach, as it were. (The abbreviations frequently used on these boards are explained here).

You may be urged to get your mom to an "NCI-designated" CCC. The National Cancer Institute, or NCI, is the primary funder of cancer research, and in this context, the term "comprehensive cancer center" has a slightly different meaning, based on a facility's research interests. Institutions choose to apply for NCI designation (the selection is done through a peer-review process), and the term "NCI-designated" primarily has to do with the facility's research programs --- not the quality or scope of patient care.

An "NCI-designated comprehensive cancer center" means that the institution is involved in research in three areas: laboratory, clinical and population-based. All NCI-designated comprehensive cancer centers also treat patients. An "NCI-designated cancer center" concentrates research in one or two of those areas, and a few of these facilities -- like the Wistar Institute in Philadelphia or the Salk Institute in San Diego -- do research only. Further information about the cancer centers program is available here.

Given that your mom has been dealing with this for a couple of years, a second opinion from a facility where all they see is oral cancer is warranted. At the top of the list would be those you have already identified -- MD Anderson in Houston, Memorial Sloan-Kettering in New York City and Johns Hopkins in Baltimore. Closer to home, there are three NCI-designated centers in North Carolina: at UNC Chapel Hill, at Duke and at Wake Forest. (Duke -- along with Anderson, Sloan and Hopkins -- is also part of the National Comprehensive Cancer Network, or NCCN, which OCF founder Brian Hill mentioned in his post.)

The "tumor boards" (where the various specialists get together to discuss each case and recommend a treatment plan) at these places may agree with the plan proposed by the doctor she has been seeing, or may have other ideas based on their experience. The NCCN treatment guidelines that Brian referred to can be found here. (The main part of the OCF site contains pages and pages of information, all vetted by OCF's Science Advisory Board.)

This was posted by SusanW in February, shortly after her husband was diagnosed with SCC by a general ENT in New York City. The replies to her first post encouraged her to get him to Sloan-Kettering, which she did:
[quote=SusanW]The ENT guy said his practice (three guys) sees about one case of oral cancer a year. Sloan sees 3500. A bit of a difference. The strong message you guys sent me about where people should go is so important. I hope the word is out there.[/quote]
I wish you and your mom all the best. She is lucky to have you in her corner.

Wow that is a lot of information to absorb. Thank you so much. Im trying to understand _ ill probably have to reread that a few times. We have an appt with her surgeon/dr next Monday to discuss what we want to do next. He doesnt know yet that we want to go somewhere else. What exactly should I tell him we want done?

I responded to your PM. Let me know if I can help you further.

Sorry -- didn't mean to be confusing. But new posters here are urged to get to an NCI-designated CCC (as Kelly did for you on the first page, which he posted while I was writing my reply). In NCI-speak, the terms "comprehensive cancer center" and "cancer center" have specific meanings dealing with research interests -- so you might feel that you should look only at the places the NCI calls "comprehensive cancer centers." Any facility on that NCI-designated list (apart from the few that only do research and see no patients) will take a "comprehensive" approach to patient care, bringing in a variety of specialists to develop a treatment plan.

Your mom should simply tell her doctor that she wants a second opinion. If he balks or gets defensive, he's not the person who should be treating her. Good physicians will welcome the views of more experienced colleagues who deal only with this disease every day.

You should not need a referral -- and should not wait for her next appointment in a week to get things started. The M.D. Anderson website, for example, has a link in the upper right part of the home page for patients or family members to request an appointment, along with a phone number for appointments. The websites of the other centers I mentioned have similar links and phone numbers. Be sure to ask what they need to see in terms of lab reports, doctors' notes -- even the slides taken from your mom's surgeries.

If you want to keep the current doctor's office in the loop from the beginning (rather than starting the process now but not telling them until your mom's appointment next week), call today and tell them she wants a second opinion and see if they have contacts at one or more of these places who can help move things along -- though at facilities that see a lot of referrals, things tend to move quickly anyway once initial contact is made.

I guess youre right ni that we dont need his 'permission' to get the ball rolling. I will call them today. I guess I was just looking for guidance as to which place would be best for us. Should I consider whats closest to us because they are all great hospitals or if one was better than the other. I guess theres not answer for that.
Thank you again for your input. I really appreciate it. Its helped me a lot and made me feel more confident in our decision since coming here

Tell him you all want what is best for him as you all love him and need him to have the best treatment available. Good luck to you all and it seems he has a good caregiver in his corner. This is a necessity for his battle.

[quote=EmilyE]Should I consider whats closest to us because they are all great hospitals or if one was better than the other. I guess theres not answer for that. [/quote]
That's a very personal question, and the answer is different for everyone. There may be insurance issues, or travel-incurred costs that you just can't handle.

If you go by the US News rankings, the two specialty hospitals for cancer -- M.D. Anderson and Sloan-Kettering -- are, not surprisingly, the top two for cancer treatment. Hopkins is #3 (and is #1 for ENT), and Duke is #9.

I recall an OCFer a couple of years ago whose husband was treated at Wake and was very satisfied. Search on "Wake Forest" (in quotes) in the search box at the upper right of each forum page to find her posts.

But geography should not dictate where your mom gets care. Several years ago, one OCFer who lived in California moved temporarily to New York City for treatment at Sloan-Kettering. In the last month or so, davidcpa helped a woman in Florida to be seen at the top cancer center in that state (where he was treated), even though it's several hours from her home, because she could get more advanced treatment there than was available closer to her.

Emily,

Several people here have been treated at Duke CCC and have commented on their positive experiences. It is a Comprehensive Cancer Center. On the left side of their web page is a tab for "Make an Appointment".

Please do not let traveling distance be an obstacle. Get the BEST possible treatment for your mom. She has been through a lot already, and it seems that her oral cancer is an aggressive one. I recommend it be treated by knowledgeable doctors who have the most experience with oral cancers.

Duke would be my choice in NC.

W have definitely considered Duke. I wasnt sure about their expertise with ENT. We really just want the best - regardless of distance. Ive figured out from doing research on their websites that most hospitals offer discounted airfare rates for patients and family members

[quote=Leslie B]If you go by the US News rankings, the two specialty hospitals for cancer -- MD Anderson and Sloan-Kettering -- are, not surprisingly, the top two for cancer treatment. Hopkins is #3 (and is #1 for ENT), and Duke is #9.

But geography should not dictate where your mom gets care. [/quote]

I have personal experience with the ENT Department at Hopkins. I feel it's a good choice. If distance is no problem, then the choices Lesley listed above are the best.

Hoping for a good outcome for your mom!