Hi everyone, I'm new to the forum. My mom was recently diagnosed with stage 4 oral cavity cancer. She needs to have a portion of gum, jaw, tongue and pharynx removed as well as the lymph nodes on the right side of her neck removed. After pathology comes back we'll know if she needs radiation and chemo. We met with 2 doctors who we really like. One reconstructs the jaw using the leg bone and the other reconstructs using the shoulder blade. Is there anyone who had reconstruction using the shoulder blade? I believe that one is less used. My mom is 71 so one of the doctors recommended the shoulder blade to decrease odds of DVT and embolism and to get her mobile sooner. We are having a tough time deciding.

Welcome to OCF. You are in the right place for info and support. We will help you and your mother get thru her upcoming battle.

Im sorry but I cant remember any members who have done this type of surgery and used the shoulder instead of their leg bone or a titanium plate. My suggestion would be to get the very best medical care you can for her. If you have an option to take her to a comprehensive cancer center (CCC), thats the avenue I would recommend. At a CCC, they use a team based approach so all the doctors meet together and are all on the same page. They have a better overall outcome percentage, much better than smaller local hospitals where this type of cancer isnt treated as often.

Best wishes with everything!

Welcome to OCF, Jessica.

This is the best place to hear first hand experience of patients that have undergone oral cancer treatment.

Finding doctors you can trust is really important and it seems you like the ones you have now. Since you have questions about the recommendation you can and should obtain a second opinion. There may be other options that might be available. Good luck. Don

My mom is 76. She has the jaw replacement with her lower leg (not shoulder blade, sorry). She was up with therapy 3 days post surgery. She was doing three laps around the nurses station at a time by the time she left the hospital 8 days post surgery and was getting around with a four wheel walker by the time she started radiation.

The shoulder surgery may be easier, never heard of it. But in just my case, the leg surgery wasn't too devastating.

How do I know if its a CCC? The 2 I'm looking are NYU and Mt. Sinai.

http://www.nyuoralcancer.org/

and

http://www.mountsinai.org/patient-care/service-areas/ent/areas-of-care/head-and-neck-cancer

There is much confusion with the term CCC or CC. Any hospital can call themselves a Comprehensive Cancer Center or Cancer Center for that matter, and there is no trade name for such. There are organizations such as NCCN, National Comprehensive Cancer Network and NCI, National Cancer Institute, that have their own approved listing, as well as U.S. News Report's Best Hospital listings in Cancer, ENT.

The two you mention, NYU and Mt. Sinai are both top cancer hospitals, especially in ENT, and are on the above lists, and I go to both, in addition too, Beth Israel, which is part of Mt. Sinai now.

http://www.nccn.org/members/network.aspx

http://www.cancer.gov/research/nci-role/cancer-centers/find

http://health.usnews.com/best-hospitals/rankings

Paul, which doctor did your ORN surgery?

Long story since I've been treated all over NYC, but basically was being followed at Beth Israel as of mid 2012, and needed most my teeth extracted by then, but persistent cancer prevented that, and HBOT, so it was finally done last November, but the 3rd molar socket didn't heal, showed bone, even with conservative treatment, so I had minor oral surgery with a buccal flap with the oral/maxillofacial surgeon there, Dr. Alan Schwimmer, who did the extractions, but that still didn't heal, so was sent to the chief oral maxillofacial surgeon at the same location, Dr. Daniel Buchbinder, who is an expert with ORN, for possibly extensive surgery, but it is finally healing after conservative treatment. He, and the Chief/Director of Surgical Oncology at Beth Israel, Dr. Mark Urken, are experts as well as others like NYU, Mt. Sinai, even MSKCC, NY Presbyterian, Lenox Hill, so there are many to choose from, which makes it difficult in selecting.

I notice on your link it's the oral cancer division at NYU. I go to the Division of Otolaryngology Head and Neck Surgery and Oncology, which may be a different location, different doctors for the most part than the oral cancer division.

http://nyulangone.org/conditions/head-neck-cancer/treatments/surgery-for-head-neck-cancer

http://www.wehealny.org/services/BI_otolaryngology/staff.html

[quote=Jessica22]How do I know if its a CCC? The 2 I'm looking are NYU and Mt. Sinai. [/quote]

Hi Jessica,
Newsweek had a recent issue on the best cancer doctors. At Mt. Sinai they call out Eric M Genden, Sr., whose specialty is cancer surgery and reconstruction. At Beth Isreal, Stimson Schantz, at NYU, Mark Persky. They may call out others at those hospitals, but the list is by doctor's name, not institution.

My husband developed a blood clot in the leg a couple of weeks after surgery. We weren't expecting it and it was found serendipitously. Treated with warfran and not a big deal.

Good luck with your choice, don't second guess it. Your family is in my prayers. Susan