| Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | Had another biopsy today. It is in the exact same place as my first tumor was. Is that common? Damn, I hope it's not malignant again but it probably is. The ENT cut out a great big chunk for pathology and OUCH. He said he would call me Friday. I could tell by the way he acted that he suspected it was cancer. But he said that's where the majority of the radiation was aimed. Does radiation help the cancer come back if it doesn't kill it? Oh I can't get the butterflies out of my stomach. I probably won't sleep until Friday.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | 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 | Im sorry you are going thru this again. Hoping and praying the biopsy is negative. It could be scar tissue, lets hope so anyway. Your doc is extreemly fast if you will get the results Fri. Most biopsies take a week for the results. Radiation does not help cancer return, it kills everything in its path. If one tiny cell has hidden and was not hit then it will regrow.
Try your very best to stay busy and not let cancer steal away your time. I know how difficult that is but its in your best interest. Its not cancer til they say it is. Go out and live your life. 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: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | Thanks Christine. Right now I am in so much pain I can't think of anything except cancer. The local wore off and my whole mouth just hurts like crazy including my gums and tongue and cheeks and everything. All from a hole under my tongue about half the size of a dime (from the biopsy). Should everything in my mouth hurt like that? Now I'm thinking the cancer is all over the place. I have Hydrochodone but it's not working. It's gonna be a long night.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | So sorry to hear you are in pain. Please let your nurse know tommorrow so they can put you on something more effective. It isn't good for you to be in pain and not sleeping. Hang in there. Hoping for the best for you.
KATE
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | I did manage to get some sleep but when I woke up my tongue filled my entire mouth - and I'm not exaggerating. Is it supposed to swell up that much? I can hardly talk.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Barbara, I am so sorry you are going through this again. On the tongue swelling, mine swelled so bad that I had to go to the ER and get high powered steroids cause I could not even breathe and it was sticking out my mouth. Please, please, please keep us posted.
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: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | They just told me to put ice on it and I did that all evening last night. But it is swelled up again. I am going to call them when they open at 9:00 and tell them.
I am supposed to get results of biopsy today too. Oh how I pray it's scar tissue or an infection. Anything but more damn cancer.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Sep 2009 Posts: 177 | I am so sorry you are going through this! I know the fear your going through. Hang in there! I am sure they can do better for the pain. Tongue swelling, ah yeah, been there. That is one of my most unpleasent memories in all this.
Wendy 46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | Got the results and finally GOOD NEWS. No cancer, just scar tissue. I am so happy. Now, is there anything I can do to make this hole under my tongue heal better and not get the painful scar tissue or will I likely get a lesion thing there again after a few months? The ENT didn't say to do anything after the first partial glossectomy and now he didn't say anything about this biopsy, which was another big chunk of my tongue.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | 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 | YIPPPEEEE!!!!!!!
So happy to hear you got a break. No cancer, yeah!!!!! 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: Sep 2009 Posts: 701 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 701 Likes: 1 | Barbara,
Woohoo--GREAT NEWS!!!!
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | I am so happy for you. Whooo Hoooo!!!
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | DITTO 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 | | | | Joined: Jan 2006 Posts: 101 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jan 2006 Posts: 101 | So glad for you- Celebrate with a popsicle (vodka on ice-)just kidding- hope your tongue heals well.
Last edited by jennie; 08-23-2010 07:01 PM. Reason: spell
Caregiver to Erik -1st DX 12/22/2005 SCC of Tongue, T3N1M0, hemi-glossectomy,60 nodes removed, carboplatnin,Erbitux, 35Rads. Reoccurrence T1N0M0 4/14/08-partial glossectomy-16 weeks Erbitux and Taxol- 3rd reoccurrence 5/18/12- partial glossectomy
| | | | Joined: Jun 2009 Posts: 138 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2009 Posts: 138 | Thanks so much to everyone for your support. I guess I have another 2-3 weeks before my tongue heals again but it was sure nice to know what it was that was hurting. My daughter said I should try and keep my tongue still to avoid scar tissue developing again. In other words, she says I talk too much. But I am going to try really babying my tongue this time. I had actually thought I was supposed to exercise my tongue but I think it is my jaw that I have to exercise and keep my tongue as still as possible.
BOT-SCC Partial glossectomy 7/16/09. Stage IV, Rt ND 10/2/09. Teeth out 11/5/09. Port/peg in, 11/20/09. 7 wks rad & chemo, end 1/22/10 lung, colon biopsies 1/9/11 - both cancer colon resect surg 1/10/11 Folfox + Avastin - discontinued 6/11 lung surgery 3/13/12, 5/1/12 mets to liver and bones passed away 9/4/13
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | I was given exercises specifically *for* my tongue! Tongue and jaw stretches were equally important, you don't want either one atrophying.
- Margaret
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: May 2010 Posts: 37 "OCF Canuck" Contributing Member (25+ posts) | "OCF Canuck" Contributing Member (25+ posts) Joined: May 2010 Posts: 37 | Congratulation's! I am so happy for you!
Stage 1V scc of toncil 12/1/09 Peg in 01/18/10 35 rads 3 cisplatin tx ended 03/02/10 | | | | Joined: Nov 2009 Posts: 92 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 92 | Never thought I'd be glad that scar tissue would cause anyone problems, but I am this time. Very good to hear that's what has been causing your pain. Do well.
44 at 10-26-2009 Dx; SCC, T2N2b, St.IV BOT; Rt. Tonsil out; PET 11-12-09 (3 spots); 3 rds Cisplatin, Taxotere and 5-FU started 11-19-09; PEG 12-24-09; 7 wks chemo-rads done 03-16-10. 06-28 CT/PET watching 1 node; PEG out; 11-15 CT - larger; 11-23 PET activity up; mrdc 12-21; 04-01-11 CLEAN SCANS! ; March 2018 new SCC - Meet with surgeon 4-4-18
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