I'm sorry that I haven't been an active participant on the forum. I do come and visit from time to time and say a prayer for everyone involved with this nasty stuff.

My family and I are getting ready to move from Sitka, AK to Kings Bay, GA. I've had excellent care in Seattle. All my check-ups and biopsies have been negative. My year mark is coming up and we'll be in the middle of moving.

The military facility there will refer me to civilian care and I was wondering where I need to go for the best care in Jacksonville. I'm a little anxious that my yearly biopsies will be delayed, but with your help I can get a leg up on finding a good doctor.

Patty

I just recommended Shands (affiliated with University of Florida) in Jacksonville. My husband has gone to Shands in Gainesville for 8-9 years and is happy with his care. I would hope they have similar excellent staff in Jacksonville. Please see a newcomer, an RN, by the name of "Fullofquestions" for her take on Jacksonville OC doctors and hospitals. She just posted today too.

I was wondering what happened to you. Glad to see your life is moving right along Here is a list of cancer centers....

http://oralcancerfoundation.org/resources/cancer_centers.htm

Patty,

I am a caregiver for Carol who has recently completed radiation and chemo. No surgery is planned but her doctors are monitoring her progress very closely.

Carol had seen an ENT in December and was quickly referred to Dr. Nelson Goldman, ENT, Shands Jacksonville, UF Division of Oral & Maxillofacial Surgery, Faculty Bldg. Dr. Goldman's specialty is Head and Neck surgery and is head of the Combined Tumor Board. Being aware of Carol's financial situation, lost her job because she became too sick, he took sponsorship of her, and pushed for Carol to receive 100% full rating city contract (also known as "Shands Card"). She eventually got medicaid, but that's another story. Dr. Goldman is a no nonsense Doctor, up to date on everything OC.

Carol had her radiation treatment at the UF Proton Institute, Shands, and her radiation oncologist is Dr. Robert Malyapa, UF Radiation Oncology. Another no nonsense Doctor, tells you like it is, and expects you to follow his instructions to the t. When Dr. Malyapa wasn't available Carol saw Dr. Randal Henderson. Unfortunately there was one doctor that kept patients waiting.....

Carol's Medical Oncologist is Dr. Dat Pham, Hematology/Oncology-Pulmonary Division at Pavilion II. Another no nonsense Doctor who also stopped in to see Carol while getting her chemo.

Except for a few hiccups, Carol has received excellent care. She really believes she got lucky when she saw the first ENT, Dr. Lawrence Lisska (private practice) who referred her to Dr. Goldman. They are old friends and to make a long story short, Dr. Lisska was Dr Goldman's ex-wife's Doctor. Sounds like a General Hospital storyline. LOL

Shands Jacksonville takes up a couple of blocks, easily accessible from I95, I10 and surrounding areas. Initially it's a maze, but you quickly learn where to go. ALL the Doctors are employed by Shands and the paperwork you sign and the posted signs in every office remind you of that fact.

It's a VERY busy hospital, especially the ER, as accident victims, victims of violence mostly are taken to Shands. The helicopters are, unfortunately, flying in and out all the time.

There is a VA clinic by Shands and the clinic does share some space at Shands. The VA Hospital for this area including GA is in Gainesville. From Jacksonville heading West on I10 is about 45 minutes to an hour drive. Shands-Gainesville is nearby.

There are other hospitals here; Memorial, Baptist, St. Luke's and Mayo, but I hadn't done much research of these hospitals for OC. I have to plug Memorial Hospital however for Cardiovascular. They took very good care of me when I had a heart attack last August. Within 45 minutes of calling 911, I was in surgery having 2 stents placed. I was also "lucky" as the Surgeon just "happened" to be there. If I remember correctly Memorial does have a Cyberknife Division.

I would recommend Shands-Jacksonville because of the care Carol has received for her OC. When you get to GA, have the Doctor refer you to Dr. Nelson Goldman, if you decide to go with Shands. You also may want to inquire with the Doctor about other military members that have come to Shands for treatment.

WOW, relocating from AK to GA. That is definitely a change in scenery. LOL. Welcome to the East Coast.

Linda
Navy-RET

ElCee,

Are you saying that Carol was treated with PROTON therapy. If so shee if the first I have heard of. I llloked into this myself but was sent the more traditional IMRT route.

Please respond as this is a brand new way to treat oral cancer.

*I think of you often Christine. I'm hoping your son is adjusting well with military life too. Once I get to GA and get settled I'll be sure to send you some photos from there too. I will miss Sitka very much with all of it's beauty.

*Thanks lostpassword. I'll be sure to take a look those posts. Another fellow RN too.

*Thank you ElCee! I just took a look and Dr. Goldman is on my list of approved providers, as well as Shands. I see you're Retired Navy, my Father is retired Navy and my husband is in the Coast Guard. Hence the move to GA.

Thank you for your help......now to get back with the program and participate more.

Kelly sent me a PM which I responded to just a few minutes ago. I need to clarify that Carol did not have Proton Therapy but also went the route of IMRT. All radiation treatments are done at the UF Proton Institute Bldg at Shands-Jacksonville. From my understanding there are 6 Proton facilities in the US and Shands-Jacksonville is the best and state-of-the-art. Shands has 3 Proton machines, number of IMRT's I'm not sure of.

The use of Proton Therapy for OC patients, IMO, would be a definite advantage as they would be able to more aggressively attack the tumor itself without destroying the nearby healthy area. Which would increase the patients survival rate and the recovery process. I read somewhere Shands-Jacksonville was doing a clinical trial on certain OC patients using Proton Therapy, but Carol didn't meet the criteria.

They use Proton here for prostate patients, but any other types of cancer they use Proton for I don't know. I can tell you that there are too many prostate cancer patients. A few families have traveled over the "pond" to have their kids treated here.

I'm sure the cost of Proton can be prohibitive too. If your insurance would pay for it, would using IMRT be more "cost effective", etc.

I also need to participate more on this forum but Carol's needs are my primary focus. Received a letter from Florida Medicaid last Friday stating Carol's Medicaid ends 6/30 due to Medicaid "not hearing from you regarding your re-determination." We have done everything as required, via mail, re-certification via internet, etc. Someone has dropped the ball, big time, now we have to learn the appeal process.

Boatswife - I still miss the roar of jet engines and the whirl of helicopters..I was in the aviation side of the Navy... When I hear planes in the air I follow them until they're out of sight. LOL

Linda

Thanks ElCee,

I took a hard look at Proton therapy, but all three of my opinions said go with the tried and true IMRT. I don't even think they had a clinical trial for OC at the time so it is interesting to see they might have one now.

Something for Brian to keep on his radar.

When I get a minute I'll do more research and find out where I saw that info and get back with everyone. Carol's next appt with the RO isn't until the end of July but I may put a call into his nurse about any info she can supply. It was in the Feb/Mar time frame when Carol was going through rad/chemo. I was finally able to get a hold of someone to request a Medicaid appeal hearing now I'm making copies of documents. I like to TRY to be ahead of the game but now my printer is saying enough! Ran out of ink.....

Linda

Thanks for the input. I just got off the phone with Dr. Goldman's office.......he has some wonderful office staff!!

I have a lot to set up before I see him on Sept. 24th, but at least I won't be further delayed by waiting to get in.