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#111314 01-31-2010 12:44 PM
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Rett Offline OP
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Who really is the specialist for after-care treatment with oral cancer? Is it the ENT? Because it seems as if they don't know a heck of alot about post treatment issues. My dad has been very sick with an infection and now breathing difficulties in the hospital and no one seems to really know what to do. I am very frustrated. He is so sick, and no one has any answers.


Rett
Father 80 y/o with BOT Stage IV/ SCC, laser surgery to remove tumor 8/08, Hemi glossectomy, reconstructed tongue, right side neck dissection, RT began 10-8-08, chemo not recommended because of age, Peg tube, non smoker/drinker.
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Where was he treated?

All my after care has been handled by my RO and the Chief of Oral Surgery at Moffitt even though I didn't have any surgery to speak of, just a search for my Primary. I now alternate seeing one or the other every 6 months. I also see my PCP for "regular" stuff like blood work or flu symtoms, etc.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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We continue to see the Head and Neck surgeon every few months. My husband has had so many issues since his original surgery that the H/N was always our "go to" guy. The other Drs. were always a part of the team but the H/N coordinated a lot of those other visits for us. If you are not happy with the care he is receiving, by all means contact the original person who treated him. You need some big guns now. Also, if you are still unsure, the nursing staff has the inside scoop on who is the best.

I hope this helps.

Anita


Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
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This is the area where I think should have more support actually. From my experience and then reading others on this forum there really is no one that helps deal with the after effects of the treatment.

Finding anyone with the answers to it is frustrating as well. I have had to push my medical team for answers on the many issues and after effects I've experienced, and I have a great team in place. They seem to have the answers to treat the cancer, however the damage caused by treatment and surgery seems to be beyond most.

My MO and ENT are who I start with for physical/chemical issues, my Oral Surgeon for dental and my surgeons for after surgery issues. I use my GP for blood work only as sadly he's the "weakest link" and other then being a nice guy really isn't the sharpest tool in the shed.


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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Rett Offline OP
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Thanks for your answers and support. He's been on a ventilator twice this week and it doesn't look good. They think his trachea has just been weakened by everything, though they are not really sure. Unsure what to do at this point. It's been a long, hard week.


Rett
Father 80 y/o with BOT Stage IV/ SCC, laser surgery to remove tumor 8/08, Hemi glossectomy, reconstructed tongue, right side neck dissection, RT began 10-8-08, chemo not recommended because of age, Peg tube, non smoker/drinker.
Joined: Jun 2007
Posts: 5,260
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I see my ENT , Oncologist and another Dr for mine and usally the same day with appts.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here

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