| | Joined: Apr 2009 Posts: 329 Platinum Member (300+ posts) |  Platinum Member (300+ posts)
Joined: Apr 2009 Posts: 329 | 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
SCC. of the left lateral tongue, anterior two thirds, T1 possibly a T2.
Left partial glossectomy, left selective neck dissection 4/21/09. Nodes clean, No Rad, No Chemo.
CT Scan 9/11 clean, CT Scan 9/12 clean
Moffitt Cancer Center in Tampa, FL. A+.
My hometown Lockport, NY.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | 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.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 701 Likes: 1 | 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
Anita (68)
CG to husband, Clark, 79,
DX SCC 11/07, T4N0Mx, PEG 1/08, RAD, post rad infection 3/08,
HBOT 40 dives, ORN, Surg 11/09 mandibulectomy w/fibular graft.
Plastic Surg 4/10, 12/10, 3/11, 10/11, 4/12, 10/12. All PETS clear,
PEG out 1/11. 6/11 non union jaw fracture
Fractured jaw w/surgery 7/14
Aspiration pneumonia 7/21, 10/22
PEG 7/21
Botox injections
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | 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
Last edited by Jeanna F; 08-25-2011 10:39 PM. Reason: spelling
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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!!!!!
ChristineSCC 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  | | | | | Joined: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | 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.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | 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
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | 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.
ChristineSCC 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 | | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | 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
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Agreed - Christine - tell him we're all here for support!
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
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