| Joined: Jun 2010 Posts: 1 Member | OP Member Joined: Jun 2010 Posts: 1 | My father had some precancerous patches removed from under his tongue about 2 years ago, he recently felt something under his tongue which they removed and biopsied, this was all done by an oral surgeon. The oral surgeon told him it was cancer and has referred him to an ENT. My dad knows nothing at this point and couldn't answer any of my questions, I am also an RN so I know too much as it is. He see the ENT on July 2, my sister and I are going with him and need to know what questions to ask of the doctor. Can anyone give me a list of things that I should know that this point? I am assuming this appointment will just be to get additional testing scheduled to get a stage and care plan in place. Also, is and ENT that right person for him to be seeing? Will an oncologist be involved at some point? Any help is MUCH appreciated!! | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF. You will find so much info on the forum along with caring current and former patients and their caregivers. There is also the main pages of OCF that has a search engine. Most of the general public does not know very much about oral cancer. Even in your profession Im sure you havent come across very many oral cancer patients. Under the tab 'New Posters Read This First" there is a guide that every person on here should read. It tells you so much about oral cancer including the first doctor appointments. It has posts that are from OCF members as well. This is the best info you can get, its right from patients and their caregivers mouths. http://www.oralcancerfoundation.org/board_images/GTI_draft.pdf ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | I would get him an appt with a Comprehensive Cancer Center and skip the ENT. The CCC will have Docs from all of the appropriate skill areas and will have treated more cases in a year than most single Docs see in a lifetime. With a CCC he will get a team of cancer specialists meeting him and reviewing his case in a Tumor Board setting and they collectively will decide the beast course of Tx and it will all be handled under one roof. He may very well only get one chance to kill his cancer so I would want that to be my best shot. List of CCC's here: http://www.oralcancerfoundation.org/resources/cancer_centers.htm
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.
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | If your father is in St. Louis also and wants to stay in the area, look for posts by Nurse Ratched. Her husband was being treated at Siteman Cancer Center at WashU (it's on the list that David linked to) and I expect she would be happy to answer any questions about his care there. You can get her e-mail address (through her profile) or send a private message by clicking on her name at the left of her posts.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Jun 2010 Posts: 111 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2010 Posts: 111 | If I had to do it all over again, we would skip going to our local ENT and head straight for a CCC. Good luck
my mom, age 59.
12/08 surgery & 33x rad 4/09 recurrence 5/09 surgery & 35x rad 12/09 recurrence 1/10 surgery. peg tube, trach, fibula free flap 6/10 recurrence. double chemo treatments. 8/10/10 finally at peace in heaven | | | | Joined: Sep 2009 Posts: 63 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Sep 2009 Posts: 63 | I agree that you should head straight for a CCC. I started out a local hospital that operates on the pretense of having a cancer center but it's not the same. I received radiation there but they had no one on staff (ENT -wise) who was familiar with oral cancer. I was lucky to have them recommend me to a CCC close to home for the rest of my treatment but I could have saved a lot of grief if I had gone there first. Best of luck to you and yours!
Pat - 62 yr. old -DX 8/29/09 SCC stage III floor of mouth Lower teeth& bone removed Port& Peg Cisplatin x3; Rad 35 - ended 12/21/09 Fox Chase 2nd opinion-mandibulectomy; tracheotomy; left neck dissection; jaw reconstruction 5/13/10; flap failed;new flap 7/13/10; lipo January 2011
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Take the above advice and get to a CCC as this fight is like no other he and your family will be in, David is right on track, the CCC team is the only way to go!!! Semper-Fi Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Welcome to OCF, glad you found us, sorry you had to! As a medical professional you've seen or read about cancer, you can never really "know" cancer until you've lived it so it's good to take your cues from those that have traveled that road.
The resounding advice here is to get your father to a CCC...I would take that advice. As a nurse you know better then anyone that there are good Dr's and bad Dr's...all have a God Complex but some wouldn't know their ass from a hole in the ground. A normal ENT will deal with mostly ear infections and tonsilitis all day long with the occasional cancer patient...not my 1st choice in a life or death situation.
Get the best medical advice available to your father...after that the only thing that he can control is his attitude and nutrition...the rest is up to how his body responds to treatment.
Good luck
Eric
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.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | I went to a well known CCC and was ready for the 3rd surgery in 6 months when I finally went to the 1st Dr that diagnosed me with OC. He is at a CCC but not that well know natioally, but this Dr has been wanted by the bigger better known CCC'S but won't leave this area or the Hospital he is at. Boy are we glad he can say no. The well known one , I think was using me for a guinea pig because of my age. but he is good as is is team. Go for it as David says.
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
| | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2010 Posts: 224 | I have to say I know nothing about cccs. But I went to a oral surgeon who biopsied and it came back as cancer. That oral surgeon referred me to another oral surgeon. The second oral surgeon is one of the best docs in the area for oral cancer, and he doesn't work at a ccc. I was also given a ENT for my reconstructive part of the surgery, and he as well, was one of the best. They both were very knowlegable about oral cancer and were able to answer all of my questions. I have never had an oncologist through my whole treatment as of yet, and both my ent and oral surgeon met with a tumor board to decide the best path of treatment. So sometimes you get good docs at other facilities that arent ccc's that know a lot about what your dad has. I guess it's up to you. But I wouldn't say that a ENT wont know as much as a doc from a ccc. maybe he will but maybe he won't. I got lucky i guess cuz I ended up with a oral surgeon, a ent, and a radiation oncologist that are the best in the state of minnesota, and i have yet to step foot in a ccc.
25/female at diagnosis Dx;stage 3 SCC tongue 03/25/2010 Surgery 04/13/2010 Trach,ng tube, peg feeding tube Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue. 30 rounds IMRT ended July 15,2010 | | |
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