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#173615 11-07-2013 12:57 AM
Joined: Nov 2013
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BrianPK Offline OP
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Hello folks,

38 y.o. Male T1N1M0 SCC here is my timeline:


9/20 Woke up to a enlarged lymph node on right side of neck with no other symptoms.
9/25 Went to doc 5 days later got put on a z pack, which had no effect.
9/30 Went back to doc got referred to ENT.
10/4 Put on levoflaxacin and prednisone.
10/8 ultrasound determined it was lymph node not cyst
10/13 FNA and neck scoped with fiber optics no site found
10/16 comes back suspicious
10/21 MRI
10/23 comes back clean referred to doc with more oncology experience
10/28 scopes throat again and does biopsy or right tonsil
10/31 biopsy come bag neg
11/4 PET/CT
11/5 Original large node shows medium uptake, right tonsil shows mild uptake.
11/6 Laryngoscopy and tonsillectomy performed. Freeze pathology positive for SCC right tonsil

Current condition: waiting for DNA results to see if HPV+, will see an oncologist ASAP. Dealing with the fun of an adult tonsillectomy.

History: started using smokeless tobacco in military at 18, kicked the can one or two times for about 6 months. Definitely no stranger to the bar scene until about July of last year. Married my wife/best friend who is breast cancer survivor herself 3 months ago. Not a great honeymoon surprise :-/

To give you an idea of my personality I wrote "Happy Hunting!" on my neck before my laryngoscop/tonsillectomy...

Looking forward to educating myself to help kick this diseases butt.

Brian



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
BrianPK #173617 11-07-2013 02:30 AM
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Posts: 2,671
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Hi BrianPK - You've come to the right place for the very latest in information and compassionate support from people who've been where you are. Sounds like you caught this early and have taken some positive steps towards some serious butt kicking! Until someone else gets to you, perhaps you could check out the main pages of this site which could help you with any questions you may have for your doctors or for anyone here. And wedding congratulations to you and your wife/best friend!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Anne-Marie #173618 11-07-2013 03:02 AM
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Hey Brian, had an adult tonsillectomy in 2010. I didn't think that it was that bad. Vasectomy and hernia surgery were way worse surgeries. In my experience, I would rank radiation worse followed by chemo then tonsillectomy. Hopefully it ends there. Good luck.


discovered a golf ball in my neck St.Paddy's day 2010.
Dx stage 4a left tonsil ca may 2010 at 50
non smoker, moderate beer drinker
HPV-16 pos.
tosillectomy
9 weeks Cisplatin
35 rads
nov.2010 PET NED
2011 2x PET NED
2012 2x PET Ned
3/13 Pet NED
SEptember 2013 Pet uh-OH.questionable and anxious
follow up pet, yup, its back.
mets to sub clavivular and mediasteinum nodes
biopsy positive scc.
trying to figure out next step
my imaginary friends think I am crazy.
BrianPK #173620 11-07-2013 04:06 AM
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Welcome to OCF! Please take a few minutes to review the private message (PM) I sent you. Look for the tiny flashing envelope near the middle towards the top of the page next to the My Stuff tab and click on it. There are details on how to take your timeline and make it your signature. There is a 300 character limit so you may need to abbreviate and condense it.

Best thing you can do is to be treated at a comprehensive cancer center (CCC). At a CCC they will use a team based approach, all the specialist get together to give their treatment plan so everyone is on the same page. At the very least go to one for a second opinion. Very likely your treatment will be surgery with radiation and/or chemo. Just remember whatever specialist you are talking to (when not at a CCC) will always recommend their specialty (surgeons always recommend surgery, RO will always say you need rads, etc). Take your time to read and absorb info from OCF so you are an informed patient and a strong advocate for yourself.

When you go for your appointments take someone along. Its too easy to hear some bad news and turn your ears off. Also write down questions and the answers when you have appointments. There is so much info that nobody is able to remember all of it. Some members will tape record their appointments, just ask the doc first.

The tonsillectomy may seem difficult right now but looking back it may be the easiest part of your battle. You will soon find that your intake plays a key role in this. Try your best to push yourself right now to get back to eating and drinking normally as soon as possible.

Best wishes with your recovery.

List of Cancer Centers


Christine
SCC 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 smile
BrianPK #173626 11-07-2013 05:55 AM
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Hello Brian:
I had an adult tonsillectomy 6 weeks ago, left side only. I didn't think the pain was ever that bad. They had me on oxy+acetominophen (percocet) for first 10 days, but I didn't need any past day 2, was able to just go to regular ibuprofen to handle the pain and didn't need much of that either.

Listen to what they tell you about eating soft/liquid foods. Sharp stuff like "itos" (Cheetos, Doritos, Fritos) will rip the healing to shreds and then you'll bleed. You don't want that.

About 3 weeks post surgery I developed what looked like strep throat and that was way worse than the tonsillectomy. It's still there and I'm in radiation treatment now so throat has been tender from treatment one.

Hang in there, you'll do fine.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

BrianPK #173627 11-07-2013 06:19 AM
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Brian,

Welcome, well sorta, do keep us posted and do ask us anything. You are fortunate that you found this extremely valuable site early. This will be worth it's weight in gold.


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.
BrianPK #173632 11-07-2013 07:27 AM
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Hi - welcome - you are in some good hands here there are a lot of people who have had a very similar cancer to yours. I wouldn't be too surprised if you are HPV + tonsil is a very common place to find this type of cancer. NOT a pleasant honeymoon surprise, but your wifey - having gone through her own "fun" will be an awesome caregiver I'm sure. HPV cancer responds well to rads and chemo - thankfully! But rads is HIGHLY unpleasant!!!! Just be prepared. wink the radiation people may not give you the gory details as they are afraid you will go running for the hills - we will.
That said. I am sorry you have to go through this.

Please do yourself a favor. If you are still chewing tobacco. STOP!!!!!!!!
It has toxic chemicals in it, and is an irritant. This is the only thing that may have me wondering if you aren't HPV+ since a history of smoking, and chewing tobacco (and heavy drinking) are actually major contributors to non HPV cancer. Plus the last thing you want to do is put toxic waste into your mouth when you are going through radiation!

Okay that was my rant for the day...

have a great day and HUGS to you and your wife.


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
BrianPK #173636 11-07-2013 08:08 AM
Joined: Nov 2013
Posts: 104
BrianPK Offline OP
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Thanks for the welcomes! I stopped chewing about 3 weeks ago, scared straight when the lump came back suspicious...

A little late, but punching myself over bad past decisions isn't gonna fix my throat. So I have to focus on future.


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
BrianPK #173638 11-07-2013 08:50 AM
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Brian, welcome to the family. You have a great attitude and it sounds as though you're doing everything right.

You are correct, sir: moaning over the past will get you nowhere. Glad you realize that and are moving on with courage.

We're all here for you.


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
BrianPK #173646 11-07-2013 11:32 AM
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Welcome and sorry your here. Your story is all too common. I am betting on HPV pos. Either way you get the same treatment. Not that life is not busy enough, but now you have a whole lot more work do. This winter will be a rough one. Most people get rads and cisplatin. This will make you week and tired. You will not be doing any really physical stuff come Dec and Jan. Plan ahead, do what you can now and line up help where it might be needed. I am thinking house, car, yard, work, garage, snow. For over a month I did little more than move from bed to car to couch to bed and repeat. I am almost a year out and doing just fine now.

Other will also have suggestion, but I will start with get to the dentist now. Cancer took your tonsil, do let it take your teeth.


Hockey Dad
43, No smoke, Small BOT HPV+16
8/30/12 Biopsy found SCC in Lymph node (removed)
9/19 DX 4a T1N2aM0
10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15)
PEG tube in 11/7. Out 1/4, Back at work 2/4/13
PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
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