#77133 07-18-2008 03:23 AM | Joined: Jul 2008 Posts: 21 Member | OP  Member
Joined: Jul 2008 Posts: 21 | Good morning,
Tuesday I was diagnosed with a low grade mucoepidermoid carcinoma.
The prognosis is pretty good per my ENT Dr., however I'm still going through a roller-coaster of emotions.
I'm a 37 year old husband and father of three children (8, 5, and 2.99)... I enjoy running marathons (ran three, but not real fast), have no history of any tobacco use, and sit here typing you still stunned.
Looking forward to sharing experiences, learning tips, and passing them along.
Nice to meet y'all (in advance)
Age 37, low grade mucoepidermoid carcinoma of the upper right palate 7/15/2008, Never Used Tobacco, runner (3 marathons!), Shorin Ryu Karateka, Husband, Father of three (8,5,3)... and does this mean I can go skydiving now?
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Welcome Stephen,
Someone with a similar diagnosis is sure to find you.
I wouldn't be making that "bucket list" too soon. You'll be doing a marathon soon, I'm sure.
Good luck.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | 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 | Hi stephen i have pm'd you and sent you a thread link
liz
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: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Stephen,
no skydiving yet. This is way too soon!
Best
M
Last edited by Markus; 07-18-2008 06:16 AM. Reason: you would think if you write just a line you could do this without a typo???
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | There is something fundamental wrong with jumping out of a perfectly good aircraft. 
18 YEAR SURVIVOR
SCC Tongue (T3N0M0) diag 06/2006.
No evidence of disease 2010
Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.�
Stephen Hawking | | | | | 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 | What's the Tx plan?
Where are you going to be treated?
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 | One thing if you do skydive. The fall won't hurt you, it's the sudden stop if the chute fails to open. Keep those feet on the pavement and do what you are used to. Run Run Run..
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: Aug 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2007 Posts: 83 | Stephen - I am also in NC...was traeted at Duke. Cannot say enough good things about them. Let me know if need Drs names, etc.
Bill
Bill Van Horn-53 ex-smoker, social drinker, Biopsy 8/24, Diagnosed 8/30/07 BOT T2N2-B MX Stage IV. Started treatments 10/1/07. IMRT 35 x, Cisplatin - 3 cycles - completed treatment 11/16/07. CT Scans on 1/15/08 all clear Selective neck dissection 1/28/08. All nodes clear.
| | | | | 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 | I see we have a bunch of comedians here! LOL. I'm sure you are sitting there feeling like you've been punched in the gut - HARD. No rhyme nor reason to life sometimes - and NO, Life is NOT Fair. Keep posting and asking any questions you might have - even if you think they are too wierd to ask - we've all been through this or are caregivers to people who are/having gone through treatment. This site is an absolutely invaluable resource. Welcome to the Board.
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: Jul 2008 Posts: 21 Member | | OP Member
Joined: Jul 2008 Posts: 21 | You guys are all awesome, thanks for the welcome and encouraging words.
DavidCPA - the treatment plan just changed today... during my second opinion got hooked-up with a very experienced Dr with a more aggressive plan than the original. He plans a 7/31 resection of my soft palate and into my hard palate until the margins are clear of cancer.
Then he will take muscle from the chewing muscle that runs under the scalp and deposit that under the skin to any sinus' he breaches, trying to prevent from making me lose any teeth.
This is all so surreal!
I'm going to be treated in the Charlotte CMC medical center by a Dr. with the following qualifications:
Additional Information:
CHARLOTTE EYE EAR NOSE & THROAT ASSOCIATES
EDUCATION:
Undergraduate: Summa cum laude, Yale University, 1978
Medical School: Harvard Medical School, 1982.
Internship: General surgery, Boston University Affiliated Surgical Program, 1983.
Residency: Otolaryngology - Head and Neck Surgery, University of Pittsburgh, a program consistently mentioned as one of the finest in the nation, 1987.
BOARD CERTIFICATION: American Board of Otolaryngology. He is a fellow of the American Academy of Otolaryngology - Head and Neck Surgery.
MEMBERSHIPS: North Carolina Medical Society and the Mecklenburg Medical Society.
MEDICAL STAFF: Presbyterian Hospital and Carolinas Medical Center. Dr. Kamerer currently serves as Chief of the Department of Otolaryngology - Head and Neck Surgery at Carolinas Medical Center and is the Surgical Director of the Multidisciplinary Clinic for Head and Neck Cancer at Carolinas Medical Center�s Blumenthal Cancer Center, where he participates in research related to the multidisciplinary approach to head and neck cancer. He sometimes serves as a surgical representative for Presbyterian Hospital�s Multidisciplinary Head and Neck Clinic.
EXPERTISE: Evaluation and treatment of head and neck tumors, diseases of the salivary glands, thyroid and parathyroid disorders, skullbase surgery, transseptal surgery for pituitary tumors, voice disorders, and endoscopic sinus surgery.
I call him the Cancer Terminator.
...Bill in NC, can you give me the names of your Duke Dr's in case I decide to go with 5th and 6th opinions?
...that may be overkill, but just want to do the right thing. Almost went with that first Dr. but after the second opinion Dr. was surprised that my first hadn't forwarded my case to the Cancer Terminator who's in his very same group, suspicions all started to arise.
The Cancer Terminator's nurse says every once in a while, a Dr. in the ENT group will decide they want to do a procedure on their own, but the Cancer Terminator seems much more qualified... just did the same procedure on a 16 year old girl last month.
Am I doing this right?
Age 37, low grade mucoepidermoid carcinoma of the upper right palate 7/15/2008, Never Used Tobacco, runner (3 marathons!), Shorin Ryu Karateka, Husband, Father of three (8,5,3)... and does this mean I can go skydiving now?
| | | | | 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 | Hi stephen
seems like you have done your research on your medical team and although i am a "limey" and dont quite understand the american medical system,it all looks good to me.
Glad you have a sense of humour Stephen ,you will sure need it over the next few weeks.
Only one slight worry i have is i think you should change the name of your doctor to exterminator because the last thing you need is for Arnies famous saying to be stalking you.!!!
love and good luck
liz
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: 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 | I just don't know that much about your particular cancer. Perhaps Brian can shed some light. I am not much on aggressive vs not that aggressive when it comes to treatment but I am in the minority. This cancer is a funny thing in that I have seen people get the full blown aggressive in every way treatment and not survive and I have seen the minimally aggressive ones survive with the same staging.
Now the main goal is to keep you alive and this cancer will definitely kill without Tx but second to that goal, without which there are no second goals, is quality of life after Tx. So it becomes very difficult for doctors treating our cancer to balance those 2 goals together because if they don't treat us to the right degree of aggressive the second goal doesn't matter.
I went to 5 different cancer doctors and got just about 5 different Tx plans and 5 different percentage chances of survival. The odd thing was my best, in terms of less surgery, Tx plan came with my best chance of survival by the best source, a Comprehensive Cancer Center. Now back before I started Tx I didn't have the advantage of this site and in fact I didn't find this site until AFTER my Tx was over, so I knew nothing of this cancer and others' experiences compared to now so I feel lucky in many respects to have been treated the way I did and have survived with minimal quality of life issues.
Can't tell you what to do but I found getting so many opinions an education itself.
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 | One more opinion is exactly what you do want Stephan. If your Ro was at Presby in Pittsburgh, he was at one of the best. Had shoulder surgery there 3 times and both elbows put back together by Dr Dana C Mears a world wide known Orthopedic Surgeon. I wish you well and let as many check you out as you feel comfortable with. The University of Pittsbugh is Presby a great teaching Hospital with the best.
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: Aug 2008 Posts: 2 Member | | Member
Joined: Aug 2008 Posts: 2 | [quote=Stephen]Good morning,
Tuesday I was diagnosed with a low grade mucoepidermoid carcinoma.
The prognosis is pretty good per my ENT Dr., however I'm still going through a roller-coaster of emotions.
I'm a 37 year old husband and father of three children (8, 5, and 2.99)... I enjoy running marathons (ran three, but not real fast), have no history of any tobacco use, and sit here typing you still stunned.[/quote]
Over on the other side of the country, I've just joined you Stephen. Low-grade Mucoepidermoid Carcinoma diagnosed last Thursday, age 39 husband and father of an 8 year old boy. Play ice hockey 3 days/week, no history of tobacco, and stunned as you were a month ago...roller coaster of emotions is right!
| | | | | 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 | Hi there Frantzy
firstly welcome to OCF,and secondly how unusual to find two men with such similarities in circumstances joining the site with one of the less common forms of Oral Cancer.
The shock and the "roller coaster"scenario are however common to all newly diagnosed forum members who have not always been lucky enough to find this site so early in the journey as you two have.
Following Brians guide lines i would advise you to read the introductory forum,and then using the search engine at the bottom of the page read everything you can about the disease,its diagnosis,staging,treatment and prognosis,and then paper and pen in hand,fire away with the questions.
On a personal note,having a fellow sufferer to compare feelings and worries with is a great help so why not PM stephen?, the journey can be a lot easier with a friend.
good luck
liz
Last edited by Cookey; 08-24-2008 11:20 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: 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 | Frantzy,
When you do come back with questions, etc it's best to start your own post so that we can give you our undivided attention.
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: Aug 2008 Posts: 2 Member | | Member
Joined: Aug 2008 Posts: 2 | I'll follow both of your pieces of advice, David & Liz
Thanks,
Mike | | | | | Joined: Jul 2008 Posts: 21 Member | | OP Member
Joined: Jul 2008 Posts: 21 | Just posted some PM and public replies to Mike, thanks for your advice everyone!
Welcome aboard Mike!
Age 37, low grade mucoepidermoid carcinoma of the upper right palate 7/15/2008, Never Used Tobacco, runner (3 marathons!), Shorin Ryu Karateka, Husband, Father of three (8,5,3)... and does this mean I can go skydiving now?
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 53 | Since a couple people mentioned that this is a rarer form of oral cancer, I just want to note that it is true, with SCC taking about 85% of the cases. But the OCF web site has information on this form of OC as well. Here is the actual page http://www.oralcancerfoundation.org/facts/rare/mc/index.htmMost of the rest of the site information stays the same, even though this disease type is slightly different.
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.
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