| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) |  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Let's just put it this way. I would much rather be alone than have company of any age enduring this OC at any time. The less we have the better. One to remember.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | And yes there have been quite a few under 30 and some under 20 in their teens.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | It amazes me that my Dr. did not think it necessary to have radiation and chemo. I even asked my ENT about seeing an oncologist and he said he would be glad to refer to me to one, but that they would not do anything since I got clean margins on my last surgery. It is has been six weeks since the surgery. I do not go back to him until JUly 1 and then we schedule the PET scan. I wonder why he said an oncologist would not do anything at this point. I am beginning to wonder if I should have went ahead and had him refer me to an oncologist. I will probably go ahead and do that at my next appt. I sure do not want a reoccurence of this stuff.
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: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Angelia, your case is exactly why a CCC with a multi-disciplinary team looking at your specifics is better than a single ENT or Oral Surgeon -- That's why Tumor Boards exist.
In my case, I started with an ENT who recommended radiation, but not chemo (Don't know why and didn't know enough at the time to ask) -- His feeling was that even though we got clear margins (second time around), we should nuke the area for stuf too small to detect -- He used the analogy that we had a double-barreled shotgun and got the bear with the first shot but shouldn't hesitate to fire the second just in case. Had he not believed in radiation, then I would have gone that way.
Long run for me, it didn't matter because my cancer came back in slightly different fashion (First tumor was external; second was internal, third was external).
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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