| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | My Dr used to ask me if I was smoking too. I had quit before any rads and chemo were begun. Maybe us exsmokers just arouse suspecion. I hate to be ask that when I am innocent. I'm sure you have quit too as most of us do.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | Dianne,
Happy healing.
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: 10 Member | | Member
Joined: Sep 2008 Posts: 10 | Dearest Diane:
I don't mean to discourage you. I was also in your shoes with an SCC on the tongue and base of the tongue. Had a total glossectomy (whole tongue removal), radical neck dissection, and tracheostomy. It was stage II. I was elated when informed by my oncologist that I did not need radiation and chemo. However, unfortunately I had a recurrence in July and had to undergo another major operation in August. I am not sure whether the recurrence was actually caused by not having the rt. But, this time my doctor insist that I go for rt. So, do be very careful and always be on the look out for any sign of recurrence.
Warmest regards,
Sharifah
SCC on the tongue. Stage II. Total Glossectomy 04/07/08. Recurrence in July. Also Stage II. Partial Mandibulectomy 08/13/08. Radical neck dissection in both ops. All lymph nodes negative. Radiation starts 10/10/08
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Diane,
As Sharifah said, please be very careful. Your Doc might be absolutely right, and I very sincerely hope he is, but if you read my intro post of a few days ago, the 21st, you'll see that you need to watch and act immediately if anything seems "off". I don't want to scare you or take the wind out of your sails, but I cringe every time I hear someone tell, or see someone write, what seems so close to the beginning of my story.
I'm almost 2 yrs post treatment of my recurrence and I'm doing well under the circumstances, but I now know that I absolutely should have received radiation after my first surgery. I know this not only because of the extremely fast and furious recurrence, but because my Docs at Shands were visibly surprised when I told them that my local ENT hadn't ordered it.
Again, I hope with all my heart that your Doc is right, but do be careful.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow I don't know what to say we were all so elated about the news even before my surgery the doctor was almost certain I wouldn't have to have radiation. Well even if it does reoccur for now I am cancer free and will have to deal with things as they come...my mouth is so messed up right now wouldn't know normal from abnormal at this point...anyway I am just going for the here and now and right now I am cancer free...day by day...healing and gettting stronger...
Thanks
Dianne
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Ask the Dr many questions , I was given the all clear the day of my surgery but ended up with either a reoccurence or the OC was never gone. Not trying to scare you, but it happens that mistakes are made.
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: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | Congratulations Dianne. Try to keep going forward with a continual watchful eye. If you can avoid radiation that is all the better quality of life you can have. I and many others know that you can go through the full gamut of treatment and all the hardship that entails and still lose the battle. So, seize the moment!
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Congratulations Dianne, from another no radiation survivor.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | I am going to definately keep an eye out but everything is still so swollen it is hard to tell kinda what is what but I stuck my tongue out for the first time the other day it still does what it wants but there is more control. every day nurses are asking me and looking and watching...I go back to doctor in 6 weeks he wants to make sure too....He is a very caring doctor and I also understand that mistakes can be made at this point I am celebrating one day at a time!!! New outlook enjoy today cause well tomorrow is not for us to know!!!
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | | | | 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 | Good to see that you are being looked after by great nurses and a caring Doctor. I am now a 2 year no radiation survivor myself. Had a 2 year follow up last Friday 26th and will be posting more about that on a thread where others advised what checks I should be getting. Still trying to gather my thoughts on this unsatisfactory visit to the cancer clinic. http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=80231&page=3Gabriele
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
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