| Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | Its been a while since i've posted. I've been on the forum and reading but have not contributed much, mainly because other posters are so much more wiser and eloquent than i am.
Well its now 1 year since treatment started. I have to say that i've been doing really well. I'm back at work full time and have started going out again. My saliva have started to come back as well. Taste buds still have a long way to go but this does not bother me at all. I'm just happy to be alive and be with my beautiful family and friends. Life in general is great!!!
I Was hoping to reach the 1 yr anniversary of my treatment ending but then i get a sore. Its now 2 weeks and it has not healed yet. So panic has set in. Gosh how fast does your mental state change. Anyways i'm calling my ENT tomorrow and scheduling an appointment - probably for a biopsy. Meanwhile the waiting game has begun.
Thank you to everyone on this forum but especially to Charm, Christine, all the Davids and Jim. Your knowledge and wisdom has helped me through this past year. I dont know how i would have made it without you guys on here. So thank you again
Minh
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Minh,
It's very natural for your mind to go right to panic mode when something goes amiss in the area where your cancer was. I think we've all been there so its ok. You are doing the smart thing by getting it checked out.
I will say that I think you should share more. The more I study people the more I've found that everyone relates differently to others and your perspective may reach someone that another one of the "wise or more eloquent" may not be able to.
There are great people on these forums that help a lot of people but I don't relate well too and then there are others that I just "get" and most of what they share speaks to me. Who knows who you can help if you don't share?
Just my perspective for what its worth Minh
Eric.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | 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 | Minh, I am so sorry to read about your scare. Please let it be nothing more than scar tissue. Im sure you are very worried. A recurrence is what we all fear more than anything in the world. Please do your very best to keep yourself busy with your family and working. It will help keep your mind from going to the 'what if'.
I would love to see more of your posts. Do not be concerned about being overly eloquent. We are not doctors on this forum so do not worry about sounding too technical. You have successfully gone thru treatment which in my book makes you as much an expert as any other patient on this forum. Please feel free to jump in and share, it could make a huge impact on someone's life.
I will keep you in my prayers that you are well. Please make sure you come back more frequently and post whatever news you have. You have many friends here who are in your corner!!!! 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: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | "OCF Down Under" Patient Advocate (1000+ posts) Joined: Aug 2007 Posts: 1,301 | I hope you got that appointment with the ENT Minh? Sorry to see you need to follow up on that sore but you know the drill. The best way to be sure is to get it checked out ASAP. Please keep us posted on the outcome. Willing you to get that ALL CLEAR! Gabriele
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma. 14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad. 6 ops and debulking (flap/tongue join) + bx's 2006-2012. bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia 24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | Joined: Sep 2010 Posts: 179 "OCF Down Under" Senior Member (100+ posts) | OP "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2010 Posts: 179 | My ENT is away so i saw his stand in (who was young and cute! hahahahhaah). He has a good look and scoped me said he thinks its nothing suspicious and wants to wait another 2 weeks before he biopsy. He said its not ureasonable for an ulcer to take 4 weeks to heal if its on the side of radiation. I'm comfortable with his decision but still worried about it in the back of my mind. I'm not overtaken by panic so can still get on with life. I have a 3rd birthday party to organise for this sun!! Crossing fingers it will heal soon. Thanx everyone. Minh PS Eric you make me laugh, i always love reading your posts 
35 Yrs old 03/10 SCC T1-T2 Partial Glossectemy end March - margins not clear enough. While waiting for resection - cancer returned,2 new cancerous lumps Re-section End May & flap from cheek attatched. Margins clear. Mid June - 4 teeth out Mid July -32 Rads and 3 Cisplatin 6th Sept 10 Finished Treatment!!
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | Doesn't it feel great to know you have dealt with it? I know you will still worry until you get a complete resolution, but I love your attitude - you are not going to let this worry steal your days until that happens. Keep us posted. Sending good thoughts your way.
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)
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Good luck, fingers crossed for you that its nothing.
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
| | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: May 2009 Posts: 1,412 | Minh, The same thing happened to me back in December. I had an ulcer show up and did not go away, this area also lit up on a PET scan. My ENT out me under to do a frozen section biopsy, and it was just radiation damage. I went through HBO to help get it healed. I was told that it was normal for something like that to take longer to heal, but good that I did not waste time in getting it checked because one never knows until it is. I am glad you went and had it checked. Go ahead and get into your regular ENT when he is back in the office, because he knows more about your history than his stand in.
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
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