| | Joined: Mar 2015 Posts: 55 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2015 Posts: 55 | Hi everyone. After about a week of ear-ache and a lump in my neck I went to my GP 2 days ago, got a referral for a CT scan, met with my ENT guy, and got the preliminary diagnosis you see in my signature block. From the CT scan the tumor was sized at about 2cm. The doc took biopsy material and scheduled me to see a surgeon next Friday April 3. I should get confirmation then and start down the road towards a treatment plan.
I came across this site and forum this morning while seeking out information about a subject for which I am profoundly ignorant. I browsed around the forums a little, and you all seem like a great bunch of folks. I am hoping to learn a lot from you to help me through what lies ahead. Along the way, and as I learn more, I also hope to help others that face similar problems. It's really comforting to know that support is there. Thanks all.
Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
| | | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | Hi, PJE
Welcome to OCF Site! As you can see from my signature, my husband's diagnosis was very similar. It's great that your GP did the referral without a lot of messing around with antibiotics - the quicker the diagnosis the better! It sounds like the word is getting out.
Will you be treated at Carbone? That is a CCC - should be top flight for treatment.
Again, welcome.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Mar 2014 Posts: 79 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Mar 2014 Posts: 79 | HI PJE
welcome to the forum I too had tonsil cancer, sorry you have to be here but glad you found us. Any questions you have will be answered by people who have been down this road and have lots of experience and tips to help you through. I had the ear ache , sore throat and tongue and severe trismus I know know all to be classic signs but my GP wouldn't refer me to an ENT specialist for a further 8 weeks and 2 courses of anti biotics , nothing sinister they said you have no risk factors....,! So I too am glad they have moved things more swiftly in your case. The treatment is brutal no getting away from that but some seem to manage better than others , however it's all doable . I'm 15 months on and doing good.
Thinking of you and wishing you well, keep us posted when you feel able to.
Love Di x
Di 47 none smoker / drinker
T4 SCC left tonsil
1 Cistplatin,30 RAD finished treatment on 4/12/2013
Trismus
First MRI scan appears clear
TX
NG tube 9 weeks
acute vommiting, syringe driver 9weeks
2 month checks
| | | | | 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! Im sorry you have the need to be here but you have found the very best site for info and support. We are fellow patients, survivors and caregivers who have been thru this and know the ins and outs of this dreadful disease.
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: Mar 2015 Posts: 55 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2015 Posts: 55 | Thank you for the good wishes Maria. I expect to be going to the CCC, yes. My ENT guy said the surgeon visit was just the first top. Then on to radiology, chemo, emotional, and so forth. As I read others' stories here I am feeling really lucky to be where I am and with what looks like an early diagnosis. | | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Welcome to OCF! So glad you landed here in time to hook up with folks who have a ton of experience to help you answer questions and offer suggestions at the right time. None of us are doctors or know anything about your specific case, so rely on your team to guide you along that path. We can offer lots of practical and first hand advice on many of the events you will likely experience as you begin treatment planning all the way through treatment and recovery phases.
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: Feb 2015 Posts: 5 Member | | Member
Joined: Feb 2015 Posts: 5 | Hi, you are ahead of the game! I'm sorry about your diagnosis but you are one step closer to getting past this and moving on with the rest of your life.
You will most likely discover that you are braver and stronger than you ever imagined! Blessings to you on this journey.
2010-surgery for stage 2 squamous cell carcinoma of right lateral tongue. Partial glosectomy with right neck dissection. Clear margins
2012-return of cancer to same area of tongue. Surgery with removal of 2 molars which irritated tongue. Clear margins again.
2013-return of cancer to tongue, floor of mouth and jaw where teeth were
extracted. Rad and chemo suggested - I declined.
2/2015-Mandible fibula, free flap surgery. My leg is truly in my mouth 😆
| | | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2007 Posts: 595 | HI You will find a great support group here, make sure to get to a CCC as soon as you can and listen to them. Be brave and strong thru this war you are in. 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: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 4 | Welcome - there area a lot of people here who've had a similar diagnosis... ask away!
hugs.
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: Nov 2013 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Nov 2013 Posts: 104 | There are a number of us that have been in your shoes. You are not alone. The HPV+ is a very good indicator of a successful outcome for you. The journey is tough, but please ask away.
Brian
Stage IV TxN2aM0 HPV+ SCC 38 y.o. male
9/20/13 Sentinel Node Found
12/5/13 Start of 72Gy and 5 bags of Cisplatin
1/21/14 Treatment Ends
1/25/15 1 Yr clear
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