| | Joined: Oct 2009 Posts: 5 Member | OP  Member
Joined: Oct 2009 Posts: 5 | hi my name is meanne and i am new to this fellowship of oc survivors and their caregivers/spouses/significnt others. i caught my scca of the oral/base of the tongue fairly early. i'm having surgery on thursday 10/29 and really don't know what to expect afterwards i think i'm having a partial glossectomy on the r lateral side of my tongue. i wish i had more info rearding post op and what to expect i would appreciate any info/personal stories etc. you all could give methanks a lot | | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi meanne
Really sorry to hear your news but there are loads of great people on this site who will be able to help & reassure you & more importantly lift your spirits.
M xx
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | | 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 | Sorry for the diagnosis and welcome to the site. I know you will be bombarded with questions, such as size of tumour, location of the tumour, staging of tumour, where are you being treated - are you at a Comprehensive Cancer Centre (CCC), what is the doctors treatment plan - aside from surgery will you have radiation and/or chemo? ETc, etc. By the time we are done, we might not know your shoe size, but you might as well give that info up right away as we will probably ferret it out sooner or later! We have alot of people on this site who are very experienced in treatment and will provide you with some great questions to ask.
Feel free to post how you are feeling as well. This is an awesome spot to share those fears that only those who have been there can understand.
We look forward to hearing more from you soon.
Donna
Last edited by Pandora99; 10-26-2009 10:14 AM.
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: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Dear Meanne, so sorry to hear your news. It stinks! I'm assuming they did a biopsy to get the diagnosis. Do you know what kind of surgery you're scheduled for? It's good you find this site, there's a wealth of knowledge and experience and caring to get you though this. As was mentioned in other posts are you with a CCC?
Keep in touch, eat well over the next few days
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | 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 | Meanne,
Have you gotten more than one opinion?
Where are you being seen?
Donna mentioned a CCC and that would be my next stop.
I personally would not want my tongue cut out, partially or in any manner, until I knew it was 100% necessary. I would even opt for radiation if it meant saving my tongue.
No node involvement?
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 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Sorry you had to join this place, but welcome. I am glad you found us. There are a lot fo people here that have mroe insite than I do. Yes, you will be bomarded with questions and you may not know the answers. That is okay. Make sure you ask lots of questions of your Drs and I would highly recommend getting more than one opinion. I learned that the hard way and am now getting a second opinion before my treatment begins.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hello Meanne, I too send all my best wishes your way. I also had what you have, but I ignored symptoms and the cancer spread into my lymph nodes. The ENT wanted to do surgery right away, thank goodness, I met with my radiologist before I went through with the surgery. I never had the surgery because my radiologist said she could "cure" me with radiation & 4 chemo treatments. Well, so far, so good! I am cancer free. The treatment was not easy, but you do what you have to so you can beat it. Again, like others have suggested, 2nd, 3rd. opinions matter & could make a big difference in your journey. With this said, best of luck, eat to your hearts content (eat a whole bag of potatoe chips for me!) keep us posted. Stay hopeful & positive! Dianne
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Meanne,
I am confused by your post. The base of the tongue is different than the lateral border. Between now and Friday, we can answer some of your questions, but we need more facts as stated above.
Getting an opinion from a CCC is more important right now than getting answers from us.
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: Oct 2009 Posts: 5 Member | | OP Member
Joined: Oct 2009 Posts: 5 | thank you all for the kind words, i am also glad i found this sight when i did. i am being seen by dr. padhya at moffitt cancer center in tampa, fl.i was lucky as we live in the area and cn be seen easily. i met with almost everyone on the team pain management, psychiatrist, radiation dr and of course the surgeon. i wi;ll be having a r posterior glossectomy with a r neck dissection and possibly skin grafts/flaps to close the tongue incision. will probably have a feeding tube(dobhoff) to go home with if they do the grafts as they won't want the tongue to move for about a week. surgery should take 2-3 hours and a 2-3 day hospital stay. my surgery is scheduled for 12 noon on thursday,tomorrow and we are going out tonite for all you can eat seafood dinners. my 2 sisters are coming down from tallahassee, they are both nurses as am i. what i really want to know more about is the post op period can you eat,swallow,talk how long should i plan on being out of commission things of that sort and also what the caregiver shopuld expect with all of this. thank you all so much for youirs posts i really appreciate it. oh yeah and what about teeth i have heard that they have to be removed in some cases. my shoe size is 7 1/2!!! | | | | | 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 | Meanne,
Dr Padhya was/is one of my docs at Moffitt. Please be sure to tell him David Hastings said Hi and he needs to start exercising! He's a great great guy.
Who will be doing the radiation?
Any chemo doc?
I would start eating now and not stop until they made me lie down on the operating room table!!
What's the shoe size info for?
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.
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