| | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Here you go. It is available without having to create an NCCN accoutn click NCCN guidelines here
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Welcome to OCF - so sorry you joined our club.
Check out the OCF main pages - the best and most up-to-date source of info on oral cancer. Both the main pages and the forum have search functions - lots of good information contained on OCF and a terrific resource.
Great advice so far, and as others have said, go to a comprehensive cancer center. A medical team approach is better and where you are treated does make a difference!
For each appointment have a written list of questions to ask, bring someone with you to take notes, and record the conversation if the doctor will allow it. Ask for copies of any and all medical test results. Very helpful to have to review later and if you seek a second opinion (which is another recommendation). Get a notebook or binder to keep all your information in one place.
Ask if they will be doing "frozen sections" during surgery, which is a biopsy done during the surgery. Helps to make sure they "got it all" during the surgery. Use the search function on the OCF home page for more info.
Keep in mind no question is a dumb question, both to ask your doctor or here on the OCF forum.
Wishing you the best!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | [quote=las3645]what document? [/quote] I expect he's referring to the treatment guidelines prepared by the National Comprehensive Cancer Network -- an alliance of 21 top U.S. cancer centers.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there I answered your other post in introductions... And gave you a list of things sort of. I will reiterate two of the things I said there... go to a CCC if you can. Moffat supposed to be a top place to be treated for H&N cancers. And this cancer can be aggressive. Even if it doesn't show up in the nodes on a scan it does not mean it isn't there. It can exist microscopically. I had no more than six weeks pass between dx and surgery. My nodes were clear on two cts the day after dx. Over christmas (7 days later) I found a lump nestled under my chin about 1 cm. I had an MRI a week after that. It said negative for spread. My dr. said I don't care. I'm removing 40 nodes regardless. The day of surgery I showed it to him - actually put his finger on it. He said doesn't matter it's coming out. That node was positive for cancer, and had broken through the node into the tissue (in less than 5 weeks). Throw the book at it the first time out if you can. best of luck...
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2013 Posts: 37 | The waiting is killing me. How do you handle all the waiting involved? Or do you just learn to live with it. It has been 4 days since dx, and feels like it has been a year. I just want to walk into the dr office or hospital and demand to know my CT/x-ray results. I will hopefully find out today.
Ugh I feel like I am going to be sick.
Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
| | | | | Joined: Mar 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2013 Posts: 37 | All right here are the results from my CT. It showed nothing in the lymph nodes, HOWEVER, it showed multiple nodules in my thyroid (and a mildly enlarged thyroid). I am now going to an oncologist team in Jacksonville to further investigate. Additionally, it showed that my tonsils are asymmetric.
Help, guidance? Anyone ever had nodules in thyroid. Thanks.
Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | No on the nodules and its possible its not ca maybe something benign they don't know without a biopsy. When are you seeing the team? Best of luck
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Mar 2013 Posts: 37 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Mar 2013 Posts: 37 | I will be having the appointment on Tuesday. Hopeful that it is nothing.
Lori, age 30 (HPV-, non-drinker, non-smoker, non-tobacoo user)
Dx 3/18/13 - T1N0M0 SCC L.Tongue
Tx 4/4/13 - Partial glossectomy (no rad/no chemo).
8/8/13 - Thyroid FNA - benign nodule
12/20/13 - Tongue Biopsy - Mild hyperkeratotic dysplasia
12/26/13 - Lymph FNA - benign (dx Cervical lymphadenopathy)
3/17/14 - Tongue Biopsy - normal tissue
5/5/14 - Tongue Biopsy - (awaiting results)
| | | | | 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 | Since you are in Florida, Moffitt in Tampa is one of the leading cancer centers in the US. Several members have successfully been treated there including davidcpa. He is on a small break right now but he has personally walked several patients into that CCC and supported them thru their treatments. Its worth looking in to.
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 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Hi Lori,
Sorry for your news. I was 39 at diagnosis. I had surgery, lost half my tongue, reconstructed with my forearm. I was fortunate in that there was no further spread, so at this point, no chemo/rad either.
The good news is I was back to work within 3 weeks of my surgery (I'm a lawyer), and full time not too long after that. Things are back to normal, although I am much more cognizant of my mortality, and have started working to live, rather than living to work.
Cancer sucks, but it is something you can fully recover from. Good luck on the upcoming tests, and keep us posted.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | |
| Forums23 Topics18,245 Posts197,129 Members13,316 | | Most Online1,788
Jan 23rd, 2025 | | |
|
