| | 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 | Nelie:
It sounds like you found a good competent doctor. Not too many will take the time a new patient needs to ask questions. Its probably a huge releif that you are now finally scheduled for surgery.
Please keep posting your info, it is a big help to others who also have the same problems. Wishing you the best of luck with your surgery.
Christine
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Nelie,
I like this guys approach. I agree that he is both cautious and seems very knowledgable. His experienc in the military probably allowed him the freedom to do and learn things that many docs in the private sector don't get a chance to do.
I'm happy that you are on the right track now and I'm sure that he will help you accomplish a lot.
Good luck on the 30th. I'll try to catch up with what's going on when I return from my vacation on August 3.
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 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Well, now I'm a little confused again. I had a pre-surgical visit with my ENT yesterday and he had talked to Dr. B--the oral surgeon--and said they weren't in agreement on whether or not I should have the coronoid proces removed as well as the scar tissue bands inside my mouth removed. He said even though the upper part of the muscle has atrophied, there can be a lot of scar tissue that has built up around that muscle in the lower jaw and that he is pretty sure removing the coronoid process will help. So as of now, it sounds like I will have that after all. He said he hasn't ever heard of ORN happening as a result of a coronoidectomy so despite what Dr. B. told me, he believes the risk is really low.
Sigh. I have had surgeries where complications that were really low risks happened in my case. At some point when things happen to you despite the odds enough times, you get less reassured by being told the "risks are really low".
He said there is a slightly bigger risk that I won't heal well because of the radiation--either way there is always HBO therapy if the worst case happens I guess. Although I know the odds don't work like this, I feel like I am really due for a surgery without complications for once!
He also wanted to stretch my esophagus while he has me under. So far, I have been going back to the hosp in Boston to have that done because I trust them and I know they can handle it if my esoph. is perforated. They are also cautious. Last time they didn't dilate me much (only to 12 mm) because I started to bleed and he didn't want to push it. I told my ENT I would be willing to do that IF he also goes slowly and stops if the esoph. starts to bleed. But I'm worried about how a perforated esoph. (which shouldn't happen if he's cautious) could be handled at the local hospital. I guess if it isn't a large perf, they just give lots of antibiotics and wait for it to heal. Again--low risk but it's already happened to me once.
Still, I do trust my ENT overall and there's a big part of me that wants to do as much in this surgery as will likely need to be done for a little while because I will already be going back for a D&C (which isn't a big deal) and would like to not have to go back for other surgery a few months after that!
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | My surgery is the day after tomorrow. It will be a cornoidectomy as well as removing the scar tissue. They have to do nasal (fiber optic) intubation because I can't open my mouth wide--something I also hate hate HATE the idea of because you have to be semi-awake. And then who the heck knows if I will heal up right afterwards since it will be radiated tissue that's trying to heal.
I did have a dream last night that I was at my mother's house in Vermont (where I am planning to go to visit with my sister shortly after surgery as long as I know what to do for physical therapy--which II understand is basically using the therabite--and my ENT says everything looks like it's healing OK at the one week followup) and that I was talking to my sister and saying that I wasn't even in very much pain anymore from the surgery, even though it hand't happened all that long ago.
I wish I believed dreams really do predict the future but at least it shows that at least subconsciously I have positive expectations of healing well-which is something I guess.
I have been psuhing to get this surgery set up all summer, and now I'm just wishing I didn't have to have it!
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | 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 |
Nelie:
You will be in my thoughts and prayers tomorrow. Surgery is always scary especially with having the nasal sedation. Ive had that done and it sure isnt fun, but it only lasts a few second then you are out. You are a brave woman who has already gone thru so much.
My fingers are crossed for you to finally heal properly. Has your doc suggested HBO to speed your healing? Do you know how soon you will be able to tell if the surgery worked? How long will you be in the hospital?
Please post as soon as you can. Best of luck tomorrow !!!!!
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: 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 |
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 | Nelie,
Good luck tomorrow and I hope your dream will predict your future. You deserve 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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Thanks for the good wishes. It isn't tommorrow I have the surgery but Wednesday--I'm just getting nervous two days ahead! Tomorrow I'll be a real wreck.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 |
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Oops...good luck Wednesday and I won't take back the good luck for tomorrow so you've got 2 days of good luck to look forward to. Maybe buy a Lotto ticket on the extra good luck day. JM2C's
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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