#73037 04-14-2008 06:23 PM | Joined: Apr 2008 Posts: 6 Member | OP  Member
Joined: Apr 2008 Posts: 6 | hello everyone. my name is laura, i'm 25 yrs old and my dad was diagnosed in december with a tumor at the base of his tongue which had spread to four of his lymph nodes. he underwent 7 weeks of radiation every day, along with 3 does of cysplatin (sp?) the doctors were hoping that he would not require surgery, but we just found out today that he will need a partial glossectomy. he has never been a smoker, non drinker, and he tested negative for HPV. he's a runner, a mtn. biker, a yoga doer, an avid golfer, and a veggie eater. i am actually pretty angry about the whole thing. what's perhaps cruelly ironic, i am currently in graduate school getting my masters in speech lang pathology. i know all to well exactly what a partial glossectomy can mean for both his speech and his swallowing. i suppose i could use some words of encouragement here...his favorite thing in the world (besides me of course, hahah) is chocolate cake. someone please tell me they have had a portion of their tongue removed and are still able to eat chocolate cake....
daughter of 54 yr old man, non smoker, non drinker, no HPV, tumor at base of tongue and met to 4 lymph nodes. 7 weeks radiation + chemo completed 3/1/08, partial glossectomy scheduled 4/23
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Laura,
Sorry to hear all that your dad has been through and that he will be having a partial glossectomy. As I'm sure you realize, no two people's experiences are the same. I had a partial glossectomy and modified neck dissection. My tumor was on the side of my tongue, so it was fairly easy to deal with. I had speech therapy and speak normally and eat way too much. I too, love chocolate cake.
I'm sure you will be hearing from someone soon who had similar treatment as your dad.
Where is he being treated and where do you live in NJ? Living in PA, just on the other side of the Delaware from NJ, I know the state pretty will. Also my children and grandchildren all live in North Jersey.
Please wish your dad good luck from me and let us know how he is doing.
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: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | Laura, I too am in NJ, runner, non-smoker,neg HPV. Call me at 732-687-3518. I know many who have had a portion of their tongue removed and eat chocolate cake. Let me know if you need anything. All the best. Rob
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
| | | | | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | Cake, chocolate or any kind is fine for me as long as it is fresh and moist. Ice Cream is a real PLUS  I had a partial, and most people say that they cannot tell it in my speech. I notice it most when tired or I am having a bad dry mouth attack. Kevin
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 | I was never a sweets eater before but now it is one of my most acute taste sensations so I am drawn to it like a fly. Every night I now must have dessert or I feel deprived.
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: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 622 Likes: 1 | [quote=davidcpa]I was never a sweets eater before but now it is one of my most acute taste sensations so I am drawn to it like a fly. Every night I now must have dessert or I feel deprived. [/quote]
Family used to laugh at me for baking chocolate chip cookies (real gooey ones) every night after dinner, so I know what ya mean David!
Yum !!
Kevin
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Desserts are my fav too! Your Dad will be OK. It takes some time to recover and rehabilitate but he'll get there. You sound like a very supportive caring daughter! Keep us posted.
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Apr 2008 Posts: 6 Member | | OP Member
Joined: Apr 2008 Posts: 6 | Hello everyone, thanks for all of your replies and I apologize for not responding sooner. My Dad had his surgery, unfortunately we STILL haven't gotten any good news. Basically the surgeon had to remove way more of his tongue than he thought, and in fact could not establish clear margins, the margins were just fishy and the pathologist could not determine if they are cancerous or not. We find out on Monday....this waiting game is just the worst. I feel so bad for him, he is such a healthy, active guy (runner, yoga doer, golfer, etc) and he has been reduced to this skinny little thing hooked up to tubes and wires in a hospital bed. I know that's not who he really is and I am trying to remain positive...but really positive thinking hasn't worked thus far. I know that that is so negative and typically I'm not like this, but I guess this has just been a reallly long week. Think good thoughts for my family and I...if only cancer could be cured by will power and wishes alone.....
daughter of 54 yr old man, non smoker, non drinker, no HPV, tumor at base of tongue and met to 4 lymph nodes. 7 weeks radiation + chemo completed 3/1/08, partial glossectomy scheduled 4/23
| | | | | Joined: Apr 2008 Posts: 6 Member | | OP Member
Joined: Apr 2008 Posts: 6 | just realized that may not have been posted in the right thread....sorry.
daughter of 54 yr old man, non smoker, non drinker, no HPV, tumor at base of tongue and met to 4 lymph nodes. 7 weeks radiation + chemo completed 3/1/08, partial glossectomy scheduled 4/23
| | | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Nov 2007 Posts: 212 | Waiting is hell, no doubt about that. It's okay to be angry, constantly being positive is hard, and here is a great place to vent. I hope your dad ends up with good news.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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