#90908 03-01-2009 12:08 PM | Joined: Mar 2009 Posts: 2 Member | OP  Member
Joined: Mar 2009 Posts: 2 | Hi everyone. I am a 40 year old female who was dx with scc of the tongue 1/07. Surgury 2/07, RT x30 and chemo thru 6/07 and have just finished HBOT and dental surgury. I never knew about this foundation or I would have been here a long time ago. I am looking for suggestions on how to live long-term after cancer dx and getting past just living from one check up to another every three months. My husband and I would love any suggestions.
I'm keepin an eye on my mouth and looking to the future!
Dx SCC 1/07, Partial glossectomy, Rt neck disection (extra-capsular spread), trach, peg, RT x30, Chemo, TX:1-07 thru 6/07, HBOT x30 1/09
| | | | | 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 | We HEAR you! Boy, do we hear you...lol. This is one place where we all struggle with exactly the same issues you are going through and, personally, I think the only "magic answer" to your dilema is to keep connected here - with this OCF fammily - who will keep you grounded, hold your hand when you are worried (and worry with you), reassure you and rejoice in great test results.
How to live long term after cancer.......... mmmmmmm...... thinking (yes, David a rareity). This is such a cliche I hate to say it, but I do think you live "better" after cancer. You live more appreciatively, more aware, more awake. You don't waste the Mondays that everyone hates and you aren't looking for the week to zoom by so that its Friday. You truly do appreciate each day, and maybe alot of the smaller things that others overlook in their hurry to make time go by faster.
I'm rambling, but will just say welcome and glad you posed the question!
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: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | As a surviving spouse i think i will pass on your question,but welcome to OCF.
liz
Last edited by Cookey; 03-01-2009 03:15 PM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | The first year is really hard- just being anxious about making sure everything is gone and going through the treatments and recovering from the assault on your body. The 2nd year gets easier. I will be celebrating 2 years from my surgery tommorrow. Never would I have thought I'd be going out to celebrate with my husband and sister and brother in law- but that is what we will be doing just that tommorrow. This past year has all about getting back in shape and getting my life back. Its been amazing. I'm so happy and thankful I survived and recovered as well as i did. i didn't knwo how far I could go to getting back to the old me- I definitely have things I can't do but I've gotten so much back.
So just be patient and take each day as it comes and keep pressing forward. You are doing great. Hang in there!!!
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | That was very well said Kate and easily understood.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 | Welcome to OCF. Glad you have found this site, its always nice to have survivors join. Im sure your knowledge will help many others.
Your question is a good one, its one we all think of. I do everyday. All I can say is that it has stopped me from being a procrastinator. I dont put things off for tomorrow anymore, I know tomorrow I might not feel up to whatever I was putting off. I also try to have a positive attitude and more patience towards others. I consider myself very lucky even though I struggle daily with the after effects of cancer. Im still here and try to make the most of everyday.
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: Jan 2009 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 97 | Exactly Christine,
When asked if Cancer changed my outlook on life that is the one thing I can point at. A complete intollerance for politics, wasted time and meetings that result in nothing more than a plan to have more meetings and planning to plan a plan.
My cartoon schedule, watching trees grow and public service suffers when my time is wasted and many don't understand why I am pushing. Silly people LOL
Get er done!
UncleVern
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Glad to see an introduction from a survivor and welcome to OCF. Part of getting on with the new normal is the love, support and humor that I get from the people here for me. I don't feel so abnormal here because I can usually find someone who has a suggestion to what ever is on my mind.
I don't stress too much from check up to check. Don't get me wrong, I still pay attention and watch for the warning signs. I'm elated with good news, but I don't feel that I approach each appointment expecting the worst. Even at the check up that included the biopsy for my recurrence when my ENT entered the exam room and asked how I was I just looked at her and said "I think we have a problem".
So many things that used to bother me in life do not any more. I almost have a "Cay Sa Ra, Sa Ra" attitude now. I was type A++++, but not any more. If I would rather take the dogs and go sit by the creek for the entire day than wash clothes, I do it. There is more peace in my life now which probably seems strange to some.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | PC, Firstly you are only 1 year post Tx and most of us continue to recover from the Tx alone for 2 + years so calm down a bit. Your body both physically and mentally have been through a lot in the past 1 1/2 years so please give everything time to adjust and to heal. I will guarantee you by this time next year you won't have the same thoughts or concerns as you do now, I know I didn't. You never said what was the suspected cause of your cancer. Tobacco, HPV or the Head Scratcher? If you used tobacco I certainly hope you don't now. If it was HPV you can PM me for my X rated suggestions. If it was the Head Scratcher then I have no idea. Try and keep a positive attitude and try to get back to your normal life as quickly as possible.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Good girl there Good1. You have the right outlook. I am like you, I never stress out for an appointment, I just take them like a duck going into a lake. Keep up the good work and don't lose your smile.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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