| | Joined: Jan 2011 Posts: 15 Member | OP  Member
Joined: Jan 2011 Posts: 15 | I'm a 52 year old man living in the Thousand Oaks area of California. I was diagnosed 12/9/10 with SCC in one of 4 lymph nodes removed from the left side of my neck. On 1/13/11 I had a diagnostic tonsilectomy and biopsy of my mouth. I will get the results on 1/20/11. I have had no other treatment yet. I do have my ENT, radiologist, oncologist and dentist in place.
Joel, 52
SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
| | | | | 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 | Sorry that you have become Another Newbie but do keep us informed when you get the recent biopsy results and any proposed Tx.
Were you a tobacco user?
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: 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 | Joel, welcome to OCF. You will find lots of support and info here to help you with everything. Hoping the biopsy has negative results. At this point try to eat as much as you possibly can. Its important to go into treatment without any regrets about not eating your favorites. If you need radiation it probably will affect your taste for a while, its usually only temporary. Best wishes and keep us posted of the results.
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: Jan 2011 Posts: 15 Member | | OP Member
Joined: Jan 2011 Posts: 15 | I have always been an active person, I never smoked and a light drinker.
Joel, 52
SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
| | | | | Joined: Jan 2011 Posts: 15 Member | | OP Member
Joined: Jan 2011 Posts: 15 | I'm trying to recover from the tonsilectomy four days ago. Can I say ouch? I lost 5 pounds already.
Joel, 52
SCC HN Stage IV, Excisional biopsy to remove 4 lymph nodes 12/2/10, Diagnosed 12/9/10, Tonsils removed, mouth biopsy 1/13/11, wisdom teeth out 2/7/11, chemo starts 2/22.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | When you recover, start eating as much as you possibly can. So sorry you had to join us, but you came to the right place. You will find lote of support here.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Joel, ditto everyone else. Keep us posted and your attitude positive!
d2
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Nov 2009 Posts: 493 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2009 Posts: 493 | Welcome, Joel. As everyone here has said...this is agood place to be. I wish that I had found OCF when I was first diagnosed. These are great people!
Female, nonsmoker, 70, diag. 5/09 after tongue biopsy: stage IV. Left hemi-gloss. and left selec. neck disec. 30 lymph nodes removed May 20. Over 7 weeks daily rads. with three chemo. PEG removed 12/4/09 Am eating mostly soft foods. Back to work 11/09 Retired 4/1/11. 7 clear scans! Port out 9/11. 2/13. It's back: base of tongue, very invasive
surgery involving lifestyle changes. 2/14: Now speaking w/Passey-Muir valve. Considering a swallow study. Grateful 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 | Joel, Ask for your slides to be tested for HPV. If your Primary is found to be either the tonsils or the BOT you have a 70+ % probability of testing positive for the virus.
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: Jan 2011 Posts: 168 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Hi Joel: Looks like we are in a very similar boat at a very similar time. I had my tonsils out five days ago, and a wisdom tooth two days later. The PET scan confirmed base of tongue primary tumor, a biopsy in late December showed it to be HPV-positive. I am now waiting for the latest biopsies, which they did when they took the tonsils out. Isn't it the worst? Having your tonsils out? I never would have thought. If the healing goes well, I will start radiation/chemo in ten days. I will look for your posts and share whatever I can about my journey to help you on yours. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
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