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.
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.
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!
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
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.
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
Sorry about this, hope all goes well for you,,, keep up the good fight in this war!! Semper-Fi Bob
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!
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
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.
Nate,
I've been following your posts. I'm sorry it came back, but my thinking is it didn't show up on a CT Scan it might be in the very early stages, hopefully. It's scary to think you had a CT Scan and the next week it's back. This really sucks big time.
I have my CT Scan Sept 22nd very scared to have the scan for fear it's back. I'm like you I look in the mirror every time I pass one.
You're in my thoughts and prayers keep on posting.
Connie
So sorry it came back. Your story of recurrence sounds like mine. I also had a clear scan in July of 09 and began to have symptoms in August of 09. Was told in October after biopsy that it was back. Glad you were diligent about seeing the changes. As that is how I knew something was wrong. I still obsess about my mouth and see changes. My ENT is always right on top of it. I pray that it is really early and no other involvement.
Hi, Nate,
I, too, am so sorry that you have to do this again. You have gotten great advice from the others. Good for you in staying true to yourself, and being persistent with the changes you noticed. You are not a bury-your-head-in-the-sand-kind of guy. Thanks for posting the details, too. I send you my very best as you prepare for your next surgery.
Anita
Hi Nate...if it's any concellation [spelling], there is a bloke somewhere in Oz, that had oral cancer, lost most of his tongue, had a rebuild, was a singer, and ended up on the X Factor 2 years ago or last year, sang like....unimaginable.....so please don't give up hope and stay strong - and you might have gotten thrush from the meds, not necessarily your fiancee or dog.....bu hafe faith & hope and stay as strong as you can....love ya mate xoxoxo ps...let them get rid of the 'c', and keep singing xoxo
Nate, I am happy to see you back on the forum! Im glad the link helped you!!! I had sent him the link to Kate's story about living productively after having a glossectomy. It really was an inspiring story of hope.
Please dont beat yourself up as to why you are going thru this again. It wont help at all. Doctors really dont know a definite answer to why most of us got this horrible disease. Just put that aside and get yourself prepared for another battle. Ive done it 3 times so I am living proof that a recurrence can be beaten. Its not easy but you already know some things so you are ahead of the game. You know what questions to ask and all the terminology.
Your medical team sounds like they are excellent doctors. Im glad you are comfortable with them and you trust their judgment. If you will get a trach, ask for a possey muir valve so you will be able to talk with it. I know it may be difficult to understand for a while, but at least this will help make it easier for you. Tell everyone, your doctors and also all the staff when you go for your consult and the day of the surgery. I wasnt sure who to ask so I just told every single person who came to see me and it worked.
We are all right here in your corner rooting you on. You will get thru this!!!! Sure it stinks, big time but you already know that. Hang in there Nate!!!!!
Hi Nate, your story is not too different from my father's. He had a nodal mass showing up after 2 years and that when docs told him that he is doing well and follow-ups needs to be half-yearly.
Wish you luck with the treatment.
Nate,
Sorry to see that the monster is again stalking you. You took the right actions. I join the others here in praying for a good outcome for you.
Malka
Nate has asked me to provide an update regarding his recurrence.
Right now he is facing a 15 hour operation on Tuesday Sept 20th. Nate will have a 1cm tumor removed from his tongue. At this time I do not know if he will be getting a free flap or trach. As I find out info I will relay it to Nate's OCF friends.
Hey Nate,
So sorry to hear about they recurrance. DAMN it... I thought you were all in the clear. Well I had the surgery you are about to have. Its been a long road and a process but my life today is great. I am pretty intelligable and I eat most food, have the occasional adult beverage.
Things are good. It was tough but you can do it.
Here is my story.
http://www.ucsfhealth.org/patients/brown_kate/Hang in there buddy. I'm pulling for you!
KATE
Agreed - Christine - tell him we're all here for support!
Hi, Christine - please add my best wishes as well!
If anyone would like to send Nate a get well or motivational card, please PM me for his mailing address.
Yes so was I looking at the calendar. He is scheduled tomorrow for surgery correct?
Nate,
Hanging in there your in my thoughts and a special prayer for you tonight.
Take care,
Connie
Best wishes for the surgery Nate. Loved the pics from the Tongue Trasher war on Cancer concert.
Especially loved the dedication to Samantha.
Thinking of you till we hear you are done and on the road to recovery.
Love
Gabriele
Ive been in contact with Nate. Tomorrow is his surgery. It sounds like it will be a rough one. It will be a long surgery, 15 hours. His docs are anticipating a 2 week hospital stay with a feeding tube and trach. I know we are all pulling for our pal Nate to get thru this recurrence and move on with his life.
On a happier note, Nate put on a concert last Saturday to benefit OCF. He dedicated it to Samantha Kemper who recently lost her battle with oral cancer at just 23 years old. Nate threw it together with only a few weeks to organize the entire event. There were several bands playing, including Nate's. They even had a pro skate boarder Guru Khalsa there who donated a signed skateboard deck to be auctioned off. Nate's event was a success, it raised $500 for OCF. Thank you Nate!!!!!
When I am notified, I will post an update.
Yes Christine, probably the surgery will be more radical considering the recurrence and that he completed his radiation just 9 months ago.
Nate, my best wishes to you. I am hopeful that you will have a successful surgery and speedy recovery.
Thanks, Christine. Nate, just sent a prayer your way and wish you success.
Hugs from julieann
Thinking of you. Best wishes for a successful surgery.
Karen
Hi Nate, Sending thoughts and prayers that your surgery goes better than expected, that you are well-cared for during and after surgery, and that you have a speedy recovery. We'll all be here when you need us. Make sure to keep us posted on your recovery when you can.
Sandy
Nate,
Fight like hell. I hope the early days in the hospital are a blur so you don't feel/remember the pain. There's too much pain to deal with when all of the "healing" is done. I'm so sorry you're going through this. PLEASE continue to be your own advocate and press the docs when you need to press. You are not crazy, you are taking care of yourself and trying to stay alive. It's time for some well-deserved good luck and smooth sailing. I am agnostic and don't pray, but I have faith in family, friends, the good people in the OCF forum, and the best medical practitioners in the world. I hope things go as well as they possibly can and that you pull through without a hitch. I look forward to see here again, soon.
Be well, my friend.
Kerri
May your surgery go smoothly today, and the surgeons hands be quick and precise, may they take away the cancer and give you clear margins and leave you cancer free. Rest yourself up afterwards, keep a positive attitude, be strong and hard willed to fight this damn disease and Win so you may have many years of fun and laughter with your Lady and your Pets and more days of jamming on your guitar with all your friends! May God Bless you Nate and I will be thinking about you all day long until I hear that you are out and on the road to recovery. Keep up the fight my man! It will be a long hard road but you can do it!
Your fellow Virgo cuz Virgo rules!!!
Sue
Nate... saying a prayer for you today... may they get it all and may you recover quickly~ ;o)
Saying a prayer for Nate today
No detailed info yet. Just know that Nate's surgery was a success. Congrats Nate!
Nate! So thrilled to hear that your surgery was a success. Hoping that your hospital stay goes OK and that you are comfortable.
Praying for you and hoping that this is gone from your body forever more!
Big Hugs to you and a high five from me on getting through one of the toughest surgeries you could ever endure. I know first hand!
KATE
Big hugs and prayers for a full recovery Nate! You will get there all of us are willing you to!
Jayne xx
Nate,
From another OCF friend I send congratulations on successful surgery. Praying for your speedy and complete recovery.
Malka
WONDERFUL NEWS, NATE. I AM VERY HAPPY FOR YOUR SUCCESSFUL SURGERY AND HOPE YOUR HEALING GOES WELL. SEND US AN UPDATE WHEN YOU CAN. AGAIN, CONGRATULATIONS!
julieann
Great to hear, Nate. Been praying for you!!!
Best wishes on a speedy recovery.....
Steve
Dear Nate,
I know you are probably a way off posting yourself but I am happy to hear that the surgery went well.
Best wishes for a quick recovery and you know where to go if you have any questions or issues that you need answers to. We are here for you.
Love
Gabriele
Hi Nate,
Been thinking of you and hoping the best for you. So happy to hear surgery was successful. Sending lots of good vibes and best wishes for a speedy recovery.
Minh
Nate,
I've been thinking about you. Thank you for the update Christine.
Your in my prayers and thoughts.
Best Wishes,
Connie
Here is the latest update on our friend Nate.....
[quote]He is doing so well!!! Can you believe it?? He looks way better than we expected and even mouthing words. His face is of course very swollen, especially on the left. They took 3 teeth too. His tongue looks good, swollen alot, but pink and the bloodflow to the transplant has been good. He's made some funny jokes and can write too. His left hand already has full mobility. He smiles too, it's mostly in his eyes. His color is excellent.[/quote]
Thank you so much Christine for the great update!
Thank you Christine. When you have contact with him, please tell him we are all thinking and praying for him and a successful recovery. It sounds like he's doing great.
Big hug from julieann
Thanks for the update Christine.
5 years ago I was were Nate is today and you know I am doing just fine
Best wishes for a speedy recovery. Looking forward to the first post here.
xoxo Gabriele
Thanks Christine - that's awesome!
Such great news! So-o-o-o glad Nate is doing so well! Thanks, Christine.
Cool, I didn't get a chance to check up on him this weekend but my thoughts were with him. Glad to hear he is doing good, never doubt he wouldn't! He's a tough young man! Keep us posted Christine, I check up on FB but I think I need to get his girlfriend if she is on there as my friend. I was wondering where they took the flap from, guess his arm/wrist?
Nate said it was planned to take the flap from his wrist area. Not sure if it happened like that or not. Here is Nate's latest update from his facebook post....
Moving to a step down room away from all the havoc tonight. Got another jp drain removed, one more to go. Doctor seems confident he snagged it all and should know results this week. PEG tube and speech therapy with PT tomorrow! Wait til they get a load of me!...Nate
Looks like our Nate is doing wonderful!!!! He has a terrific attitude and still has that great sense of humor.
Nate's concert last week raised $500 for OCF. Way to go Nate!!!!!
Thanks Christine...I am presuming yes to the flap as I saw this in an earlier update. "His left hand already has full mobility".
So wonderful that Nate is doing so well and about to get rid of that last drain. Remember that feeling of freedom well!!
Looks like he is making excellent progress and look forward to getting some of that humour and attitude here on OCF when he is posting again.
Gabriele
You are correct, Gabe! I didnt remember, sorry.
Yeah!! Glad he's doing well!!
ya I got his FB too and I guess I read it too fast didn't see that and yes soooo glad he is feeling this good so fast I hope he continues with the speedy recovery!!