| | Joined: Aug 2011 Posts: 10 Member | OP  Member
Joined: Aug 2011 Posts: 10 | Hi. I stumbled across this site while doing research on my own. My husband was recently diagnosed with floor of mouth cancer. He has surgery in 11 days. Needless to say, we are scared, nervous and anxious. From what I have seen here this is a great place to find advice and ideas. I'm sure to be visiting alot in the months to come for eating, speech and other info. | | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Missy!
Welcome to OCF! Glad you found us sorry you had to! It's OK to be afraid, normal really just know the survivors here are examples that this isn't a death sentence. Take it one step at a time and don't be afraid to ask.questions!
Good luck
Eric
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.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Missy - That was a very good "stumble" you took! This is the best place to be for the best and latest information about Oral Cancer. Do take advantage of the search functions on the main page and this one too. The more information you find, the better you can prepare any questions you have for the doctors or for coming here. It's good if someone can go with you to appointments so they can help you remember what was said later when you talk to each other. Two other people came with me when my son had surgery and that really helped me to hold it together. Lots of people have been where you are and will help you through this. Try to stay busy until surgery day and let us know what's happening.
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: 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 | Tell us more about the cancer and the planned Tx.
Sorry I have to welcome you to this site but believe me you will be so happy you found it.
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 | Missy, welcome to OCF! You will find lots of help here. Im sure the upcoming surgery is a very detailed and involved procedure. I have had my left lower jaw removed and it was a long, rough road but I made it! If your husband is able to eat, hope he gets all his favorites in now. With this type of cancer it negatively affects our eating. Your husband will need to relearn to eat again. Will he be doing chemo and radiation after the surgery? Best wishes with the upcoming surgery!!!
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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hey there welcome. This is a great place for advice with great people! His surgery wool probably be pretty involved and you have every right to be scared - bu you can and will get through it - best of luck!
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: Aug 2011 Posts: 10 Member | | OP Member
Joined: Aug 2011 Posts: 10 | Thank you all. I know we will get through this although it will be a long hardroad. His cancer is SCC in the floor of mouth. He will obviously have the cancer removed and part of his tongue. From the scans it doesn't appear to be in the jaw bone. Although, we know there is a chance it could be. They will also be removing the lymphnodes and test them. There is no obvious cancer there either. The doctors will decide on radiation and chemo after surgery. I have faith and confidence in the doctors. It's the long road to recovery that scares me. Thank you all again for the warm welcome.
Last edited by ChristineB; 08-26-2011 08:39 PM. Reason: removed illegible numbers/symbols
Wife, he was diagnosed early 8/11, SCC-floor of mouth. Surgery 9/6/11, removal of cancer, part of tongue, salivary gland and lymphnodes, skin and vessels from arm to reconstruct, graft from leg to repair arm. T3N0. Radiation to start 10/11.
| | | | | 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 | Hi and welcome to OCF Missy.
As you can see by my signature it appears that your husband is going to have much the same operation I had. Mine was also SCC floor of the mouth. Can someone here help with those numbers in Missy's post?
It will be a battle but your husband is lucky to have you as a caregiver. Do not hesitate to ask whatever questions you may have as there are no silly ones. As you can see I have also had to ask for help in my post after all this time!
Good Luck..Gabriele
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: Aug 2011 Posts: 10 Member | | OP Member
Joined: Aug 2011 Posts: 10 | The numbers were supposed to be one third to two thirds of his tongue. That is what I am most nervous about. His speaking and eating abilities after surgery. I know it will take time to re-learn those things.
Wife, he was diagnosed early 8/11, SCC-floor of mouth. Surgery 9/6/11, removal of cancer, part of tongue, salivary gland and lymphnodes, skin and vessels from arm to reconstruct, graft from leg to repair arm. T3N0. Radiation to start 10/11.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Yrs but he should br able too so try not to worry - it's harder after radiation actually! Hugs! Take care!
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: May 2011 Posts: 287 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2011 Posts: 287 | Hi Missy, my father also had partial glossectomy 2 years back. ENT had used his remaining tongue to reconstruct, i.e. they folded it to make it a full tongue, shorter in length though.
It takes a while to adjust but he is fully functional without any significant speaking and eating issues.
Depending on your husband's case, they will try to reconstruct as much as possible to retain functionality.
Wish you and your husband all the best for surgery. As Christine mentioned, get him all his favorites to eat now as it will take really long to get back in track.
Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009]
TX:Nodal Mets; 3xDCF[2011/05/05]
TX: RND + PMMC Flap[2011/07/11]
DX:SCC PNI+ECE
TX:Re-RT 60Gy[2011/09/21]
TX:Gefitinib 250mg[2011/12/18]
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Missy and welcome to OCF!! Without a doubt you have found the best site for information and support. I would also suggest for maybe your husband to join and talk to other patients/survivors. It really is what changed recovery for me and my outlook in general.
Like Eric said...it's ok to be scared. I think it's good to be scared actually....I wasn't in the beginning (not sure why) and it hit me about 2 years later and it wasn't easy.
Please know there are a lot of people here just waiting to help and support you through this journey.
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 2011 Posts: 2 Member | | Member
Joined: Aug 2011 Posts: 2 | Mine is a different situation I believe. My spouse deserted me just over a year ago for a younger woman. We are only separated. Nothing legal. Had No previous warning. I thought we had a good marriage, no problems that I knew of. She was a sort of family member in my home almost daily. Since then I have tried to keep tabs on him, because he was already disabled with a spine injury from 40 yrs ago and barely can walk. Not in the best of health when he left. The other woman is staying with him out of the guilt she has, for seducing him and getting him to leave me,and the guilt he puts on her for giving everything up to leave with her. She is not the caregiver type. Now he found out the beginning of July he had I believe ( he doesn't talk to me since he left) Mandibular Neoplasm stage 2. He had 3/4 of his lower jaw bone removed, and reconstructed 7/16 and his teeth. I really don't know his prognosis, or anything past the surgery. He still has a trach, oxygen, and they put his g tube in Fri. 7/26. He may not get to go home, but to a care facility, because of his other health problems. He allowed me to go see him twice, but she started telling the nurses and him lies. So I said I wouldn't go back. So now I'm worried sick,I still love him dearly, and worry about him all the time. And not sure if he's having to go thru radiation and/or chemo after the mouth and jaw heal or what. Can anyone who has possibly gone thru this fill me in on what he has in store ahead of him yet? Any information would be greatly appreciated. Thank you | | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Donswife,
I'm sure there are members who may be able to help you out.
You should start your own topic (thread) though. This thread was started by Missy and most of the responses/comments will be directed to her. If you have your own thread the comments will be for you.
Just go to the forum that best fits your topic and go "topic options-new topic"
Last edited by suzanne98; 08-30-2011 09:07 AM.
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 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | donswife: I'm so sorry for the difficult place you are in. You should probably start your own post on this so that any replies could be directed to you. It sounds to me like you could use some legal advice before you do anything legal, -especially if your spouse is in serious condition and something should happen to him. Also, I do not have a legal background, but as his legal wife, wouldn't you be able to get information from his doctor? You could direct your spouse to OCF so he or his partner could get some helpful advice in his recovery. The prospect of divorce is traumatic for many. I went to a Divorce Recovery class which helped me a lot. I hope things get easier for you.
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.)
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