| | 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 | Jerry, The short call list is a possibility but since this surgery involves two different surgeons with schedules to coordinate, I suspect that even if the oral surgeon had a cancellation, my ENT couldn't necessarilly shift his schedule around at the last minute.
Malka, Yeah, I definitely feel like I've been through enough! I suspect you know that feeling yourself. Unfortunately, it seems there is still more to go although whenever I feel whiney about that I remind myself that at least I am so far cancer free (knock on wood). But I would love a year when I don't have to have a couple of surgeries (at least)!
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 | Just talked to my ENT's nurse. She is setting up an appt. for me with the alternate oral surgeon so I will meet him and probably go ahead with the surgery with him. I am dreading it but at the same time I want to get it over with.
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: Jun 2008 Posts: 28 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2008 Posts: 28 | Nelie,
Don't know where in NY you are. I'm in Orange County. The local hospital by me is no prize either. Same one maybe?? I went to Fox in Philly. It was great. A long trip but worth it. Maybe you could do surgery there and therapy closer to home? I did chemo and radiation here after surgery there. So many decisions, so much confusion-good luck!
Karen
Karen-age 47 5/07stage 1 tongue right side partial glossectomy 3nodes removed on right. 6/07 didn't get it all-2nd partial glossectomy. 11/07 stage 3(?) partial glossectomy,flap.all nodes removed on right side. 1/08 peg tube. IMRT 39tx,chemo-cisplatin. 5/08 left side 1 lymph node w/cancer - removed
| | | | | 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 | Karen, It's a thought but I doubt I could get surgery scheduled there within the time frame I need to have it done by to be back at work in the fall. If it weren't for having to schedule it around my job (which I do feel like I need to do since this isn't a must-have-now surgery and my workplace has been more than generous at giving me time off when I needed it for treating the oral cancer and then the breast cancer), I think I'd have more flexibility. Which is why I sort of wonder if I should wait 11 months. But then again, I am still hoping to get ris of the tube eventually and that makes all that more drawn out boo potentially.
I now have an appointment with this "new" oral surgeon that my dentist says good things about on Monday and we'll see how I feel about the surgery once I've seen him and hopefully it can be scheduled pretty quickly.
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 | Post script. I'm in the finger lakes area--Tompkins County--so not the same hospital as you.
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: 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 and Jim need to be given some award for Hanging In There or something !!
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: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Nelie,
Didn't realize about the 2 doc problem. Sounds like a good alternative with the other surgeon. I know you'll lose the comfort level, but it's him or 11 months. Tough decision, I'm sure.
Good luck Monday.
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: Jan 2007 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2007 Posts: 97 | Hi Nelie-
On the D&C, Malka is right, it will be a snap compared to what you've already been through. I've had three(after miscarriages to clean up), they were in-office procedures, you don't even need anesthesia, just some valium/ativan to relax and then ibuprofen afterward. Hope that eases your mind a bit.
Melissa
Age 36. Four years of fighting Stage 4 Skull Base Cancer
Can't even fit it in the signature line. I've tried it all! 5 surgeries, IMRT, cyberknife, cisplatin, erbitux, AIM, taxotere, carboplatin.
| | | | | 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, I met with the new oral surgeon and really liked him. He is new to the area but has 12 years experience in practice in the military. He has lots of experience doing coronoidectomies although not on patients who have radiated tissue. But, again, my ENT who will also be there does have that experience.
What I liked best is he spent lots of time with me (and my husband who came along to help ask questions) and did a very thorough exam with x rays and also feeling inside my mouth as well as outside feeling the muscles around the jaw.
The long and the short of it is he doesn't want to do a coronoidectomy right away. I have a couple of big bands of scar tissue on my inner cheeks (next to teeth with big fillings so maybe got more radiation than they should have), and he wants to remove that scar tissue as well as get inside to the muscles and see if there are pieces of muscles that are scarred that he can remove and leave the good muscle (he won't know for sure if there is any "good muscle" until he gets in there but he thinks there might be). He wants to follow this up with really rigourous physical therapy (mainly using the therabite) and see how much of an increase on range of motion that gives me, then maybe follow it up with additional surgery if need be.
He felt the muscle that is above your cheekbone kind at the temples because that is an extension of the muscle that would be relaesed by removing the coronoid process ( I could look up the name of the muscle in my anatomy textbook which I bought a year ago to help me understand the various issues I was having but don't have the time right now). It is a muscle connected to chewing. He said it actually felt like mine had atrophied-which makes sense since I have had to stick to things that don't require much chewing for the last three years. Since it has atrophied, he said the coronoidectomy might not really make that much of a difference--that the trismus and jaw cramping problems may be due to scarring in other muscles.
Also he said with the coronoidectomy there IS a chance of osteoradionecrosis, which my ENT had been dismisive about. He said it isn't a big risk because of the location, which should have been mainly out of the radiation field and that it's a very narrow piece of bone they cut off--it doesn't leave a gaping hole in the jawbone the way a tooth extraction does. But there is still some risk which is why he doesn't want to do it unless he is pretty sure it will help.
In short, he seemed knowledgable about risks and cautious in his approach and took more time with me over this than I have been able to get from my ENT, who is always kind of rushed. The entire appointment left me feeling less fearful nd more hopeful. So I now have surgery scheduled with both of them on the 30th and we'll go from there.
Mel and Malka, thanks for the feedback about the D&C. I had one after a miscarriage years ago myself and after I was very VERY tired and weak for a few days but now I think that was more because of the miscarriage than the D&C itself. It turns out, because it isn't an emergency, they can't get me in before the 30th so I'll have to schedule it for the end of the month, probably around when my semester starts but hopefully I can have it on a Friday so I have the weekend to recover.
David, I'd take the Hanging In There award now but I'm superstitious and worry it's like tempting fate......Anyway, there are a lot of people here who deserve that award I think!
Nelie
Last edited by Nelie; 07-15-2008 08:06 AM.
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: 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,
Lets hope this different approach helps you.
I agree that everyone that gets this crap deserves an award but some deserve a bigger one.
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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