| | Joined: May 2011 Posts: 13 Member | OP  Member
Joined: May 2011 Posts: 13 | Hello everyone, I was on this site maybe a week before my surgery, may of 2009. I unfortunately decided not to log on again for fear. I was afraid to admit what I was facing. just celebrated my two year surgery anniversary on May 11, 2011. I also celebrated my two year and three day cancer free May 14, 2011. I was 42 when diagnosed with scc, I was a smoker, light alcohol, partial glossectomy, left neck dissection, peg, 7-09 IMRT, no chemo deemed neccessary. I also just finished HBO approx. two weeks ago. I suffered panick attacks and depression immediately following my radiation. I am still in thereapy and still on meds, pain and depression. I am trying like hell to get my life back, I have been online dating, it's the hardest thing I've ever had to do!!!
I was 42 when diagnose two years ago, smoker, light alcohol use, partial gossectomy, left neck dissection, peg, 7-09 IMRT, no chemo deemed nesseccary, 3-2011 HBO.
| | | | | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | Welcome to OCF. I think it's great that you found the will to open up about your issues. You are certainly not alone here when it comes to anxiety over everything from diagnosis to treatments and recurrences. Hopefully this very empathetic and giving group here will be a haven for you as you deal with things. While distance from the vent will certainly help you, to some extent (at least in my opinion) this will always be part of who you are. I am 12 years out, and still have fears and insecurities about much of it. I just try to take on each day as it comes and do the best I can with things. Some days are really worse than others, but there are plenty of good ones that make the fight totally worthwhile. Congratulations on your survival landmarks. I wish you many more to come.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | Misty, welcome to OCF! Im glad that you have decided to join. You will find lots of help with any of your after effects. It will also help you to feel better about everything knowing you arent alone. We are all in this together and understand what you have gone thru and what you are still going thru. What helps me deal with my limitations is helping others on here. It feels good to give back! That might help you too.
Congrats on your 2 year anniversary!!!
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: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts)
Joined: Nov 2009 Posts: 644 Likes: 1 | Good luck with the online dating. I wish they had it when I was younger!
Sounds as if you have had similar surgery to me. I've had lots of operations in my lifetime but the glossectomy has been the most difficult, physically and emotionally.
On the plus side I look at my scarred wrist(now lighter in colour) and think about how much I talk each day as a part-time teacher and realise how far I've come in a year and a half.
You sound like a brave and honest person who will make a good catch for one of those lucky people online.
1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | | 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 | Hi and welcome!! I know it's terrifying always wondering did they get it all - did I make the right choices - but your 2 years out congratulations!!!
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: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Congratulations. You've reached an important milestone and I applaud your courage. I also know how tough it can be to get your mind around all of this. We all go through it. But having come this far... don't give up now!
Any best of luck with the dating thing. I've dabbled in it without much success but I have friends who've done very well!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: May 2011 Posts: 13 Member | | OP Member
Joined: May 2011 Posts: 13 | Thank you Brian, your kind words and welcome are so much appreciated!!!! I also forgot that I lost the whole left botton of my mouth, not sure what they call that. What really ticks me off is that my insurance is saying that implants (teeth) are considered reconstructive surgery. I'm fighting it, However, I'm devastated. I am 43 years old, single, attractive female. How am I supposed to work and date and eat? My doctors did a wonderful job, if I had my teeth, I would feel that I could finally move on and talk about all this in the past tense. Another part of me is ashamed that I am putting so much emphasis on my looks. I don't know if that makes me a vain and selfish individual, or if it's normal.
I was 42 when diagnose two years ago, smoker, light alcohol use, partial gossectomy, left neck dissection, peg, 7-09 IMRT, no chemo deemed nesseccary, 3-2011 HBO.
| | | | | Joined: May 2011 Posts: 13 Member | | OP Member
Joined: May 2011 Posts: 13 | Be a bestfriend, never lie, and overuse I love you!!!
I was 42 when diagnose two years ago, smoker, light alcohol use, partial gossectomy, left neck dissection, peg, 7-09 IMRT, no chemo deemed nesseccary, 3-2011 HBO.
| | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2011 Posts: 571 | Hi! Congratulations on your two year milestone! It sounds like you have had a mandibulectomy? You are in good company on OCF since there are members here who have had that procedure and are generous with their understanding, support and guidance.
Handling the "business end" of this disease can be frustrating--insurance, providers, hospitals. I hope your insurance company allows your doctors to finish treating your oral cancer--to me, teeth should be considered part of the deal.
I don't think it would be normal if what you've been through didn't affect how you feel about your appearance. Please do not feel ashamed of those feelings. By doing just a little exploring in various places on the OCF forum, you'll find that your feelings are completely normal.
You have lots of spirit and such a great attitude, I'm sure you will be pushing oral cancer into the background in no time at all.
Take care!
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | So I sent you a pm...but I didn't see that susan responded on here, which I thought was odd but she may have been too busy. I know someone else around your age that lives in staten island new york that had almost the same treatment, but she had chemo too. I don't know if you are interested in talking with her, but let me know if you do and I can get you pointed in the right direction, Congrats on the 2 years!
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
| | |
| Forums23 Topics18,250 Posts197,142 Members13,328 | | Most Online1,788
Jan 23rd, 2025 | | |
|
