#92796 03-29-2009 11:08 PM | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | I can't seem to accept my MEC diagnosis and upcoming neck resection.I understand the surgery. I worked in the OR until arthritis put an end. I've dealt with ravages of severe arthritis for almost 30 yrs.I have managed to adjust and still keep my sense of humor.I've always fought back before so I'm surprised at the way I feel. "If I ignore it, it will go away." I could sit and read all day. I will have the surgery.Just worried.
Sweetpea
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Sweetpea
"No fooling?" surgery on April 1? Just helping you keep that sense of humor active and well. I was worried sick about my neck dissection and it turned out better than I feared You say you know the drill based on OR, so won't repeat anything but best wishes and good luck
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 83 | Sweetpea, You know its no cakewalk....but its not as bad as our fears make it. I had to do a modified radical bi-lateral on Oct 31st of all days. So I put on my best Frankenstein bolts and went to the OR  Now you have to know what you're looking for or you'll miss all the work that was done. Hope it all works out well for you...do ALL of your exercises and do what you're instructed and you'll be OK.
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | | 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 | My mantra - you can get through anything if you just keep your eyes closed! Its works for me so far You will get through it. Until then, its okay to take a vacation from cancer until such time as you HAVE to deal with it. Its okay to ignore it until say the day before surgery. That way you don't let it steal these days that you are enjoying with a good book. Read on! 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: Jun 2008 Posts: 148 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2008 Posts: 148 | Good luck to you. I had a racial neck dissection about 18 months ago. All went well and according to plan. Healing process from surgery was actually pretty fast. I opted for it on the front end with radiation to follow as my daughter's wedding was 6 weeks off when I was diagnosed.
Bill . . . SCC - originated in right tonsil, drifted into neck ( 28 lymph nodes removed - one positive ). Radical neck dissection in September 07, completed 34 radiation tx on January 4, 2008. Used Peg. Non smoker, 61, good shape, no previous health issues. Second year PET scan - "all clear".
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Sweetpea, one thing after the rads is that you will have your very own Halloween mask and it looks just like that bad butt from halloween. damn, can't think of his name LOL
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: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Jim:
Jason Voorhees but can't believe you never played hockey or saw it on TV - or else you had a radiologist with one twisted sense of humor
Sweetpea
the Mask is much more fencing than hockey like with its contured white mesh. Mine was hanging on my wall as a proud trophy until the recurrence so now it's down and waiting for me to learn how to weld so I can incorporate it into a sculpture
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Was trying to think of Jason from the movie Halloween. LOL maybe a physdelic ,SP, paint job with some glass eyes imbedded in it.
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: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Charm, you would have loved the 2 gorgeous gals that did my Rads.. I like to get hugged by them when I see them at the office, LOL They leave a couple of ID marks on your body LOL Just for ID purposes only. HUmmmmmmmmmmm !!!!
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: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | Sweetpea, I know what you mean. We end up doing what's necessary just so long as we don't dwell on it ahead of time and talk ourselves out of it. And the mask is a nifty trophy. Actually, I have 2 because the 1st try got messed up when I had trouble breathing and started moving around. I could be theatrical and paint a laughing face on one and a crying face on the other.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Sweetpea.....we've all said it, the waiting is the worst part. Sometimes I wish they would say, "ok you need surgery" and take you to the O.R right away. I try to let myself feel whatever I'm feeling. Don't fight it. We all focus so much on getting through it which is our fight or flight. We are programmed to fight when it comes to cancer. I wish you much luck tomorrow and can't wait to hear how it goes....xoxo
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Sweetpea,
Good luck tomorrow.
Malka
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Wishing you the best with your surgery. I will keep you in my prayers.
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: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | Thanks everyone. It's done and I'm home. Yay! It went much easier than I anticipated. I feel like a big weight has been lifted off my shoulders. It went so well there's a chance I won't have to do the radiation therapy or at least fewer treatments. That'd be great. My case will be discussed at the next Tumor Board. I probably won't know for 2 weeks. The rt half of my tongue is paralyzed. That's permanent. The rt cheek is paralyzed but it may not be permanent. I have some eating questions but I'll post them elsewhere. Thanks again for your help with my pre-surgery jitters. Sweetpea
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Sweetpea,
What surgery did you have that caused you to have paralysis in the rt tongue and cheek? I thought you were just having a neck dissection.
Glad it went well and you are home. Keep us posted as to how you are doing.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | 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 | Glad it's over and happy that you're happy. Lets hope they got it all.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Oh Sweetpea...that is wonderful news!! I'm so happy to hear you are doing good. Do they know what caused your cheek and tongue to be paralyzed?
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | 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 | Wonderful news that the surgery is done and you are now home.
Ask away re eating questions...Love to contribute on the subject.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Glad you are home and hapy sweetpea, You just have to believe they got it all and it will keep you upbeat and happy. Never have a doubnt. You are a toughy anyway and can plan a future now.
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: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | Eileen, my tumor was wrapped around the Lingual nerve and so they removed the nerve. That caused the tongue paralysis. Parts of the Facial nerve were affected during the dissection. They may or may not return to function. Only time will tell. I'm hoping. I still have quite a bit of swelling.
Sweetpea
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Sweetpea, I have facial and tongue paralysis on my right side as well. They had to compromise my facial nerve during my Mandiblectomy/Neck Dissection marathon surgery last June. The doc said I have a chance at recovery as well but it's been nine months and still paralyzed.
I had my surgery done post rads so I still have swelling and issues, but I'm in HBO now and I see some of the swelling come down after only 5 treatments.
I hope you are feeling better!
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.
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