| | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Brian....you had ALL THAT??? My goodness, you are a man of steel!!
XO
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: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | It's actually my new weight loss plan.... every few months they just cut another little piece out. I won't be taking my shirt off at the beach anytime soon. Shrapnel wounds, PEG holes, gall bladder removal, esophageal surgery, neck dissection, and that is just the stuff in the front.... I look like I came out second place in a knife fight. But hey, I'm still here.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | I believe you beat my record......but I had a jump-start on you, with numerous c-sections and other girl-stuff. You guys have to start later with the body-art!....no shrapnel for me, though (I didn't know that either. Thanks!)(My hubby is a Vietnam alum also......I guess that's where you got your shrapnel. Oops, maybe you're not as old as we are. Sorry.)
Badges of honor, eh? I like to think so. or at least prizes for living this long!
XO
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: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Proof that we are Warriors!
I have a wonderful array of battle scars myself. No shrapnel either, but biopsies, gall bladder removal, knee surgery, failed port-a-cath, Hickman line, laparotomy (that's the biggest - from my navel to my pubic bone), 2 PEG tubes, and of course, my donor site on my wrist and the the skin graft site on my thigh.
And of course, my tongue.
Apparently, some people find scars sexy. Who knew??
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: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Unbelievable, Brian... I read your brief description and think to myself 'how dare I complain'.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | I have several scars other than the neck dissection scar too from port, chest pump when my lung collapsed, and lumpectomy (which is worse than usual b ecause of the post-surgical infection). Not to mention a scar from some stiches under my nose I had to have to fix a wounded face from an accident I had when I was a kid (too long a story). I definitely view the cancer-battle related ones (which are most of them) as battle scars. I'm dreading being told I might need a hysterectomy next month after they do my D&C. If I get one, I will see if I can have the kind that doesn't leave a scar but after a while you don't care. I wore kind of a low cut shirt the other day (it was hot) and later realized it showed both my port-a-cath scar on one side and the round chest tube scar on the other. I asked my hsuband if I should change ad he said "if you don't mind, I don't mind" and I thought about it an realized I really don't mind. I'm turing 50 in a few weeks and if it weren't scars it would be wrinkly skin that would worry me. Actually, wrinkly skin doesn't really worry me too much. I'm just happy to be having a 50th year!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Jun 2008 Posts: 309 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | Nelie, I hear ya ... I have some scars from previous trials of life, but none of them worry me ... Not near as many as many of you all but that is okay, I do not mind that I am behind on this one (smiles) ... A few years ago a good friend of mine battled breast cancer. They showed up to visit and her husband told me before she came out "wait until you see her cute lil bald head" !!! I was like "WHAT!?" as I had not yet heard she had cancer ... She came out and I had to admit she was the cutest gal with a bald head I had seen and she wore it with no worries and did not wear a hat or scarf unless we went out to dinner. This surprised me as I had known her since I was 15 and she had always been one to worry about her looks, esp her hair and makeup and each week at church you would wonder what color or style her hair would be this time .. and here she was bald with no worries seemingly. When I told her how I admired that in her and hoped that I would have the same courage should I ever face that in my life, she said "" Hey, I am fighting for my life - no hair is the least of my worries and I don't care who knows it. "" That has always stuck with me... and spoke volumes to me about her courage... she became a hero of mine that day. I so admire people who can be 'real' even when facing adversity and people who look inward, not outward, for strength and identity. I look around this forum, filled with people helping people like me who are new to this and scared and all I see are a bunch of beautiful people! 
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
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"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Here is a link to Brian's story which can be found on this website http://www.oralcancerfoundation.org/about/brianhill.htm
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Oh, right, of course! How could I forget my neck dissection!
Eesh!
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: 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 | I know there is a lot to absorb but try to take this time and read as much as you can and ask us any question you need to. Take time to write down all the questions you want to ask your doctor and DON'T let them do something you still have valid questions about until you understand the why's and why not's.
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.
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