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#138588 08-24-2011 10:22 PM
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Nate82 Offline OP
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Hey Friends,

It has been confirmed, I am officially back at it...I am disappointed, Doctor is disapointed but said he is ready to go and will hold no punches. The suspicious spot came up about a week after my ALL CEAR ct/scan. For a while in between scans I would bust the door down, make someone look at every little detail going on in my mouth. Besides the the difficulty of coping with all that happened and given an all clear each time, I was driving everyone crazy. I found a new diagnosis in my life, OCD ( put him on drugs ). Got a wristband froma co-worker that said OBSESSED, I found something better than the news, yes I did , my mouth.

My mouth has became a constant live broadcast since the day I could get my mouth movement going, hey I love to talk. I enjoyed watching as the radiation sores went away, then the thrush ( my kisses back from my fiancee and puppies! ) because of such horrible breath! As I look with my flashlight in the mirror, tongue cocked to the right and lights off I see something. A very, very small white patch next to a scar; hmmm,what the hell is that? Well I go to the doctor next monday which I believe was July 9th and got that ALL CLEAR scan again and three of them looked in my mouth, I told them about that spot, they recognized and none were worried. About 2 weeks goes by, I play a huge art show with my new band and by that monday I notice a slit in the morning as I am getting ready for work. I think to myself, that is not right, but looks like a change, I know this from 50+ flashlight looks a day.

I have my fiancee look, she is in no way worried and says looks healthy just as the doctors say, just looks like a line maybe the radiation has caused. Another week goes by, I was out eating with some friends and just felt an uncomfortableness, not necessarily a pain or irritation. But hey, I figure must be the fajitas or the Negro Modelo but when get home the line has become a split. Korinne calls that monday, count is being assholes and we cant get an appointment. I worried my mom, and everyone else around me because now this line is a split and I swear I am not crazy. I honestly was kind of tired messing with the doctors, and looking n my mouth, scheduled for a new councelor and I am all this is me, I caused this line by looking to damn much. But I finally decided to go, walk in the ENT when the nurse walked out, acted like I owned thhe place and had one of the head doctors students look. He looked concerned, finally grabbed the partner of the head doctor and he says " Biopsy now, I dont like the we it looks inside of there. " Now this week,yesterday I am officially going back to war.

My doctor is fast tracking surgery and grabbing a colleage from MD Anderson whom specializes in forearm flaps. They dont know for sure but are thinking eith all or most of my tongue is gonna have to go. I am sure most of you know me, sorry about all the ranting at the beginning of this but I am trying ok. I am trying to get out of the mental mess I am and need questions and suggestions from you guys soon.

They ordered the CT for Sept 9th, and then the surgery consultation for Sept. 12th. They havent said yet, because I gather records todey but he says radiation is out of the question for the moment because of healing issues. He wants to do a free flap from my arm, depending on what they see in my neck and tongure then will know how much to take and what they may do. The pain is at minimal right now, nothing close to what and how it felt last year. Back to what I was saying, My obsession with this cancer and my mouth hopefully saved my life. I just had an ALL CLEAR scan, and then this popped out of no where,I turn 29 on September 12th, my surgergy consultation. It has now almost been a year since surgery and over a year I have been physically,emotionally, and mentally fighting this disease. I am begging for your support and suggestions.

Your Friend,
Nathan

P.S.-I believe in my ENT team, 2 of them are from MD Anderson and the others MEMORIAL. I am in the county system but hope they make the right decisions. But I need to know more of what to ask, that's where you guys come in. Last time was left neck dissection, left tongue partial glossectomy 49 lymph nodes 2 positive.


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Nate82 #138589 08-24-2011 10:34 PM
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Nate82 Offline OP
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One more add to my rant:

Thanks for the link Christine! Super Inspiring, and remember...I was HPV- , smoked heavily for about 10 years, and drank heavily for about 6. But my entire team now believes this is all a stroke of bad luck and I had a cell mutation from maybe a bad gene. The main doctor said he sees smoking/drinking tongue cancers in adults 40 + . I am trying to tell myself this is all just that. Crap Luck.


SCC left lateral tongue, left neck dissection. 2 nodes positive. 3 All Clear then ITS BACK 8/23/11 Shows 1cm in tongue in CT SCAN, Radial Free Arm Flap with Radical Neck Dissection 9/20/11 , All Nodes Negative, But Tongue Tumor Poorly Differentiated. Awaiting next step in treatment on 10/5/11... RIP Nate 7/28/12
Nate82 #138597 08-25-2011 12:09 AM
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Glad you caught it - and it sounds like you caught it early too! So hopefully surgery will get it all and there's no movement into your nodes, or what's left of them. I gather you didn't have a reconstruction before? Well a fair portion of your tongue isn't an easy surgery but the are people here who've had total glossectomies and hey are doing okay a few years out. Not to say that it takes that long but that is where they are at now. Are the considering a clinical trial for you? Or proton therapy? (I think that's what it is..). They do it for some recurrences I know one or two people have had it here. It's almost like burning the cells out. It's a good thing you are so diligent with your exams. I'm not sure if I would devote 50+ times a day to it... Once might be good. But at least you caught it and if it didn't show up on your scan then it's probably early stages!

Good luck... Hugs and take care!


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
Nate82 #138602 08-25-2011 06:20 AM
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Nate

It's with a heavy heart I welcome you to the DAMN, IT CAME BACK CLUB, otherwise known as recurrence. Your news makes the recent posts about remission being a temporary term all the more relevant. The only bright spot in all of this is you can finally quit worrying and obsessing about whether it's coming back. Not much consolation, I know from personal experience.
Take a look at this OCF poster's link
Kate Brown - More than a survivor
She is young like you and had to have her whole tongue taken yet she can eat, swallow and talk - albeit after working hard at her therapy. You can do this.
Print out this article though and show it to your doctors to see what they think about the new procedure for a thinner flap that Kate's doctors used.
If an senior citizen like myself can bounce back, you can and will also. Still this sucks big time and is so unfair.
Last but not least, here is an excerpt from the American Cancer Society about cancer coming back that I found comforting
[quote]Could I have done something to prevent the recurrence?

Although eating right, exercising, and seeing your doctor for follow-up visits are important, please understand that there probably was nothing you could do to keep your cancer from coming back. Many patients blame themselves for missing a doctor visit, not eating right, or putting off a CT scan for a family vacation. But even if you do everything just right, the cancer might still come back. [/quote]

Here's a link to the complete series of articles on recurrence
When your cancer comes back

Keep the Faith
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Nate - So sorry about the Crap Luck! But you are a fighter and you can beat this! You are in excellent hands with your team of doctors and with your OCF friends, here. Great post by Charm and terrific article on Kate Brown. I've saved her article, too. Sounds like her doctors were on top of things with the latest treatment. Stay cool and stay in the fight mode and let us know how things go. Sending positive vibes your way.


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.)



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Nate:
So sorry about your recurrence - it sucks! BUT, one of the biggest things you have going for you is your AGE. You will be so much better able to handle just about anything they do in surgery and afterwards. I'm sending a prayer your way and it'll stay with you during surgery and afterwards because I care. You are a strong person - probably just don't realize. I admire how you wouldn't stop being "suspicious" and insisted on being re-checked. Sometimes we have to fight for what our inner feelings are because we know our bodies better than anyone. Good luck and keep posting. Other posters have given you wonderful responses and advice. They're A+ in my book.
Hugs from julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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Sorry about this, hope all goes well for you,,, keep up the good fight in this war!! 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 !!!
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Well you came back on here Nate that's cool. You know we all here will pump you up and keep you positive as you move on to the next round to battle this crap. On a lighter side you and my son have the same birthday! I may have already told you that but hey I'll mention again just to be sure. Virgo's rock baby!! We are a tough breed, my birthday is the 18th too!! So you can do this and we are all here to help answer any questions you have and you will get it straight up honest no sugar coating here so you will know what to expect. But you can do this look at all the folks here who have that are on here. Keep us posted, it's going to probably be a very long surgery so make sure your family knows to try and get some rest the night before and bring books, laptops/netbooks munchies, drinks and money to buy food if needed and be ready for a long day. Ron's surgeries both were early morning first one had to be there 630am this last one 530am! ya that sucked but his last surgery went fast and was done in 7 hours or so. And he didn't want us or anybody to come and see him afterwards cuz of course you are asleep still and probably will be until the next morning, that's when I went to visit him. He said don't come when I'm not awake. So if it is going to be like that for you a long day I'd suggest after you get done and all clear you are in recovery to have your family or whoever is there go home. Ron wanted me to go home after I dropped him off! Ya ok NO! We lived to far and our hospital supplied 1 person with a pager to update what was going on in the surgery, that was pretty cool. Well good luck keep us posted and keep that head up! You'll be able to talk, don't you worry!


CG to Ron
Out of Pain 4/3/13
4/12-lung and under chin growth no treatment
1/13/12 lung biopsy
6/11 recur 6/30 resection #2 Clear margins
Clear 12/10
Surg 5/13/10 neck dis/nodes part gloss/flap R thigh all teeth out
RAD 30 8/10
DX 4/2/10 "Oral Cavity" T3NOMO
12/28/07 Non Hodg Lymph remission 7/08
passed away 4.3.15, RIP Ron, you are greatly missed
SUEZ #138618 08-25-2011 09:25 AM
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"OCF Canuck"
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Tell them to hit you with their best shot!! I agree, you have your age and general good physical health which will help you recover well.

In your writing I heard some regret about smoking/drinking. I agree with your doctors - at your age it would be hard to pin this disease on those factors. I think it is important for your treatment for you to LET GO of the idea of "why this happened". You cannot blame yourself. You did nothing different than any one of millions of 20 somethings I have known. Let that go.

Hugs, and we are here for you if you have questions.

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Sorry to hear that it is once again time to gear up for battle. Something I think we all fear. Knock it down for the count.


David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
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