| Joined: Nov 2012 Posts: 30 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Nov 2012 Posts: 30 | First let me say that i think its wonderful that so many poeple post on this site all for the porpose of helping others, but I have to say that after reading many of the posts and especially the profiles, I'm scared stiff. Im going into my 4 week of rad and 2nd dose of Cisplatin (3rd coming up Dec 10th) and the docters have told me that with this treatment there is a good chance for cure, even the posibility of not having surgery. After looking at some of the profiles it depressing. Its seems to me that I now have an endless battle that will only get worse. How do all of you deal with this in such a positive way? Mike, 55 7/1/12 R Cervicl mass size of lg grape 9/12/12 diagnsd SCC lymphoid tissue level II BOT HPV+ blind primary 10/22/12 7wks rads, 2 cispltn 11/16/12 PEG in 12/18/12 tx end 1/14/13 PEG out non-smkr, no caregiver
| | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | "OCF Canuck" Platinum Member (300+ posts) Joined: Sep 2012 Posts: 381 | Mike,
I can only speak for myself, but I imagine many of us have had a similar thought process.
It's pretty simple actually. You have 2 choices. First choice, you can fall apart, and ask "why me", and wring your hands in angst. Second choice, you can accept that this something that needs to be dealt with and deal with it.
I have told many people that this is my hill to get over, and everyone has them. I could be blind and have never seen the colors of the sunset, or deaf and never heard Etta James sing At Last, or paralyzed and never danced with the man I love. Things could always be worse than this, and when things get hard, I remind myself that I have my liberty, my family, my friends, and so much more that we take for granted, but that others die for.
It's not that big of a hill after all...
Tina Diag: Aug. 13/12 T3N0M0 50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V Surgery October 11/12 Chemo/rad on hold due to clear margins and nodes Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely. Dec 16/13 - anomaly confirmed artery, all clear nickname: "get 'r done" Plans: kick cancer's butt
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Mike � I only speak as a caregiver here, having watched my son go thru some very difficult times of his recovery. I think we all (survivors and caregivers alike) have had those �scared stiff� moments. I�ve had them big time. For me, it was getting into the �fight mode� and putting one foot in front of the other and taking care of what needed to be done. It does help to have a reason or a �why� for continuing the fight ( as Tina mentions) like family, friends, etc. For my son, it was his 5-year old daughter that got him concentrating on the �why� of his recovery and continuing on with his Rad Tx. Just waiting for something, (like your Dec 10th event) can be a crazy-maker and keeping busy doing something you like or something you have to do, can alleviate some of the anxious moments.
When those anxious, negative moments start scrambling around in your brain, give them a time limit and then force yourself to think of the positives like your good chances for a cure and of avoiding surgery. Another good possibility is that in your particular recovery, it may not get worse. Some survivors have a much easier time of it than others and you could be one of them! Hang in there Mike, and come back here often!
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Oct 2012 Posts: 118 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Oct 2012 Posts: 118 | Mike, You can never ever predict what will happen. There are no certains in life. Focus on your treatments and on getting well again. It is okay to be scared out of your skin. I kinow I am, especially as the surgery date grows closer (only 2 days now).My husband has a big hill to climb. But we will climb it and we will get through it. That's what we do. And I know you will too. So...Take a deep breath and say a prayer (if you are so inclined) and we will walk this journey together, all of us are here for you and each other. Good Luck and God Bless
Last edited by Bette; 12-03-2012 06:20 AM. Reason: typo
Bette/CG to husband Reggie 66
dx 1: SCC Soft Palate (12/06) tx: chemo and rad
dx 2: SCC 6 cm tum rt. vocal chord (12/09) tx: total laryngectomy with stoma, 2 nodes
dx 3: SCC 4 cm tum BOT (10/16/12) Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
| | | | 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 | Mike,
It really helps responders if you include a Signature Line (see mine below) so that we can realte to your posts as in this case it would be very helpful to know so we could be more specific in our replys.
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: 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 | Mike what will help you to keep this in perspective is to remember everybody is different and will react in their own way. This goes for how they respond to treatment, medications, etc. Knowing everyone is different means some have it easy while others struggle.
Learn from what you read here and arm yourself with knowledge. When its over, come back and help others. By giving back you will find you concentrate on your own shortcomings alot less. It will help you feel productive.
Best wishes with your treatments. 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: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Also remember that a lot of posters who have had really good outcomes from treatment stop posting and move on so I think you get a very "weighted" group of posters here that have ongoing problems and come to this site for support, etc.
We happen to be on the good outcome side of things..just FYI.
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Jan 2009 Posts: 476 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2009 Posts: 476 | [quote=debandbill]Also remember that a lot of posters who have had really good outcomes from treatment stop posting and move on so I think you get a very "weighted" group of posters here that have ongoing problems and come to this site for support, etc.
We happen to be on the good outcome side of things..just FYI. [/quote]
That's almost exactly what I was going to say! I have been on different health related message boards and it has been my experience that once the "crisis" is over people move on. I choose to stay so people can see that you can be CURED from this cancer and have a wonderful life! It is a rough road but you will get through this! Hang in there!
Wanda (47) caregiver to husband John (56) age at diag.(2009) 1-13-09 diagnosed Stage IV BOT SCC (HPV+) 2-12-09 PEG placed, 7-6-09 removed Cisplatin 7 weeks, 7 weeks (35) IMRT 4-15-09 - treatment completed 8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear 4-2013 - HBO (30 dives) tooth extraction 10-2019 - tooth extraction, HBO (10 dives) 11-2019 - Left lateral tongue SCC - Stage 2
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 4 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 4 | All of the above is true. You have to remember you will write your own story here. You are an individual biological human being - no two of us are the same - unless you're an identical twin and even then.... Not always. That said you can take two people with the exact same tumor, location, involvement, dr., hospital and treatment and get two entirely different outcomes. The best you can do is get yourself the best treatment at the best location, do what you can to help yourself nutrition and hydration wise - educate yourself - on diet. Exercise a little (I'm talking walk your dog or your neighbors dog) for a few minutes a day. Then do ,what you have to do to finish treatment. The live your life when you start to feel human again. Hugs. We all have our moments of sheer terror. See it for what it is and move past it. Hugs.
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 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 4 | I find knowing as much as possible helps me..the good, the bad, and the ugly, and then I deal with it, even stats, and get all my records. I guess fear of the unknown is worse for me. Information is like a road map for me to follow, and to avoid any obstacles if I can, take a different route when necessary I have no patience either, and get my results ASAP. Good luck.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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