| | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 |  Well there are two completely conflicting suggestions!!
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Jul 2008 Posts: 228 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jul 2008 Posts: 228 | Ha, yep. Definitely go for the protein though. It will help when it comes time for the surgery and all that. And veggies of course! And I still recommend those buttercream frosting cakes! Ugh. I want one right now!
Stephanie, 23, SCC on the right side of my tongue, surgery on 5-19-08, over half my tongue removed, free flap constructed from my forearm, bilateral neck dissection, one positive node. Radiation (32) and chemo (carboplatin) started on 6-16-08. Recurrence 4/09 in lungs.
**** Stephanie passed away 12.15.09.... RIP our dear friend****
| | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | I have horrid eating habits..only dinner at night. I will be trying to change that! The ulcer is on the left side underneath towards the back. Oh and no to the HPV question. I have been taking hydrododone (spelling) I am scared to take it so much I have it can give you tummy ulcers. True?
Last edited by MrsGrant; 11-25-2008 10:19 PM.
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Shaylynn, I have a friend who had SCC of her tongue at your exact age. She was in medical school, and she had her surgery and then continued in school through her radiation and chemo treatments.....can't imagine it....but she is just fine now, the mother of three children. Take things one day at a time. If you choose your caregivers carefully, you can relax some and follow their lead. I would recommend, like others, that you find the nearest Comprehensive Cancer Center for your treatment. Your psyche will thank you, as well as your body! Having the best treatment plan demands that you go somewhere where they treat lots of this stuff, and confidence in your treatment plan is vital to your sense of wellbeing.
Good Luck. You will do fine, though it is not the way you had pictured your first year of marriage. I'm betting that this experience will bring you and your husband even closer.
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | Joined: Sep 2008 Posts: 12 Member | | Member
Joined: Sep 2008 Posts: 12 | Hi Shaylynn, My husband was diagnosed with scc on his left tonsil last May. Please pay attention to what everyone is saying about eating whatever you want right now. To read between the lines...if you are going to follow a standard treatment regimen you will probably lose 40-50 pounds. You need to have the reserves in order for your body to withstand that situation. Just a friendly suggestion.  By the way, I love your name. Kendall
Wife and caregiver to David, diagnosed with squamous cell cancer/Stage 4 5/08. Primary on left tonsil stub, spread to left neck lymph nodes. 38 IMRT/3 cisplatin completed on 7/31/08.
| | | | | 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 | Did they say what Stage your cancer is? Where on your tongue is it located? I like many also tested positive for HPV. Don't beat yourself up. Most likely there was NOTHING you did or could have done that would have made a difference. It was just your body's makeup. The most important thing now is to get it treated properly and quickly. Where are you being seen?
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2008 Posts: 72 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 72 | My ENT is rec dr in Cinncinatti. I do not know where to even start if I don't like him. They have not done any scans so they do not know what stage yet. I am hoping to go today or Friday for more tests. I want to take core of this asap.
*Shaylynn*
11.25.08 SCC of tongue diagnosed @ age 23 T2N2cM0
12.20.2008 Partial glossectomy & left neck dissection. Clear margins.
6.24.09-Pet Scans show 2 areas of concern
8.5.09-Recurrence-Perotid Gland and swollen node removal
9.29.09 Carboplatin & Taxol x8 Tomo x39
11.19.09 WILL COMPLETE TREATMENTS!
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Shaylynn, IMO you need to be treated at a cancer center that regularly deals with your type of cancer. Please get another opinion from a Comprehensive Cancer Center. http://www.oralcancerfoundation.org/resources/cancer_centers.htm
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | I'll chime in here and recommend a CCC also -- The reason is that they will discuss YOUR case at a weekly tumor board meeting of various cancer treatment disciplines and recommend the best course of treatments for YOU -- Better having several minds looking at this from one perspective that just one!
Also, they will not only come up with the best treatment plan, they will also arrange post-treatment care for the side effects of the treatment.
BTW, as horrible as cancer is, the treatments do constitute a very effective weight-loss plan <big grin!>.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jul 2008 Posts: 507 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2008 Posts: 507 | Shaylynn, Since there is not an NIH (National Institute of Health) designated Comprehensive Cancer Centers in your area, you might try the following link for an American College of Surgeons CoC (Commission on Cancer) accredited Cancer Center. http://www.cancer.org/asp/search/ftc/ftc_global.aspMany CoC Cancer Centers are associated with large hospitals and follow similar methods as NIH Cancer Center (tumor boards, multidisciplinary approach, etc.). Do check with your doctors and be sure the Cancer Center handles numerous cases of H&N cancer each year (around a hundred or more cases seems to be respectable case load).
Don
TXN2bM0 Stage IVa SCC-Occult Primary
FNA 6/6/08-SCC in node<2cm
PET/CT 6/19/08-SCC in 2nd node<1cm
HiRes CT 6/21/08
Exploratory,Tonsillectomy(benign),Right SND 6/23/08
PEG 7/3/08-11/6/08
35 TomoTherapy 7/16/08-9/04/08 No Chemo
Clear PET/CT 11/15/08, 5/15/09, 5/28/10, 7/8/11
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