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#175153 12-11-2013 11:56 AM
Joined: Nov 2013
Posts: 37
fish Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Nov 2013
Posts: 37
Hello all,

I am new to this group. I was diagnosed on November 7th with SCC. I am trying to keep all of my emotions in check and do productive things while waiting for my surgery date on 1/3/14. My wife has been taking this very tough and today I am letting the doubts seep in. I know I am doing absolutely everything I can to get prepared for this fight. I am scared about the journey ahead. The waiting seems to be the worst......I'm not worried about the surgery. I am worried about the results of the Lymph nodes the will be testing. I know there is absolutely no way of knowing if the nodes are positive or negative until the middle of January. The cancer will either be completely cut out or there will be more treatement in the future. I have decided at this point that I am going to do whatever it takes to beat this! I will do it for myself, my wife and my kid!


SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
Joined: May 2013
Posts: 134
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2013
Posts: 134
Welcome. You're about to get loved on by a bunch of folks who know exactly how you feel.

At this early point, my advice would be to not worry about stuff you don't know. Easier said than done but you already have a few things on your plate so devote your attention to them. There are many steps on this journey and I doubt many of us had it go EXACTLY the way we thought it would meaning we might have spent time worrying about something that never happened!

You're already taking some good steps by seeking out people who've been down the road before. Rest and relax with people you love as much as possible. Have fun. You're not ignoring what's coming you're preparing for it. A positive attitude helps you and encourages those around you. We are all here too.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Mr. Fish,

It sounds like you have too much idle time in the perpetual but virtual waiting room of life. You need to fill the mind of your wife and yourself with a lot more fun stuff than just waiting for a life altering surgery.

Head up to Weston. Go to The Vineyards and see what dessert Charles Pirtle has cooking up, if he still owns it. Hang out with your wife at the Weston Hotel. Better yet, make it a weekend with the whole family and hit Snow Creek. Go a bit farther towards Rushville and catch the dozens of Bald Eagles that migrate with the Canadian Snow Geese along the Mighty Mo.

Hit the Plaza lights a couple extra times and be sure and go for a carriage ride. It's pretty much everything you want to do to remind you how magnificent life is. Let me know if you need a tour advisor.

Take the time to make the memories. You'll appreciate them immensely and time will go faster.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Keeping busy is the key, here. When the dark thoughts attack try not to give them too much time. . . like maybe a couple of minutes and then switch to all the things that could go right instead of the things that could go wrong. Your wife needs to keep busy, too. I know that's what helped me when my son was in treatment. Maybe she could make up a spread sheet or notebook with all the doctors' names, phone numbers, and names of the nice nurses and assistants that you/she talk to on the phone. You could ask her to make a list of questions you have or she has. That way if you have to call and talk to somebody different, you can mention names and that gets you further with having them help you. Have other people go with you to appointments and especially for your wife on surgery day. See a funny movie or whatever fun thing you both enjoy. You have a great attitude - just keep that going and you WILL beat this! My son had SCC Stage 2 and he is doing just great seven years later! Come here often. That really helps!


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.)



Joined: May 2013
Posts: 185
Likes: 3
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: May 2013
Posts: 185
Likes: 3
Welcome to the group. You have found a safe place with answers and advice. You have a short window to focus on before the battle begins. Use the time wisely and focus on you first. Nutrition, hydration and exercise are key. You are training to fight and your family is trying to cope with the unknowns. I struggled with why do I have to be strong for others when I am the one going through the trial. Be resolved your family friends etc. need to know you are resolved to fight through. That will give them security. Ironic but true. Be strong and use your energies wisely. Visit often and ask questions frequently.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
Joined: Sep 2012
Posts: 381
"OCF Canuck"
Platinum Member (300+ posts)
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"OCF Canuck"
Platinum Member (300+ posts)

Joined: Sep 2012
Posts: 381
Fish,

The news sucks, and the waiting is worse, but you are right, this is beatable!

My advice is eat your favorite foods, it took me a long while to be able to eat everything again, and that was without rads.

Take care.


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
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Fish, we've all been there and we're on your side. Do all the things people have suggested. Man, I'd love to see those eagles! But especially you need to know that you can and will get past this. There are some incredible heroes on this board, people who've been through things that I can only imagine. And they're here and fighting and enjoying life. These people are my inspiration and I hope they'll become yours too.

We're right here with you on the journey.

Courage!


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18

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