| | Joined: Jan 2012 Posts: 112 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Jan 2012 Posts: 112 | Wow, everybody is different. Chocolate stuff and milk products are even more delicious to me now. And my tongue is in different shape, defnately!
December, 2011 - T1N0M0 SSC Oral Tongue sugery (Dec 07, 2011). Partial glossectomy, primary closure. Selective Neck dissection, all 57 nodes free. 29 at diagnosis, no risk factors at all. No smoking, drinking and HPV negative. Can you explain? I can't.
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Hi Max, I know it's discouraging to have all this info thrown at you, but all in all it sounds like reasonably good news.
Keeping you in my thoughts.
Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
| | | | | Joined: Sep 2012 Posts: 74 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 74 | Max,
Sending lots of healing thoughts your way in this stressful time. It sounds like you're holding up well. Like Tina, I think the news sounds reasonably good. I'm so sorry you're going through this, so unfair, especially at such a youthful age. You've got a great attitude. What's the impact on your school work? That's a heavy load all in itself - hope you aren't stressing over that as well. You can catch up with that when you're healed.
mausmarrow.com
Age 59 ex-smoker 1989
1/10 dx MDS (blood cancer)
2010-11 21 cycles Vidaza
11/10 Bone Marrow Transplant
8/31/12 dx SCC left BOT HPV 16+ T1N2cM0
10/11/12 TORS partial glossectomy clear margins
10/24/12 bilateral ND/ii-iv 92 nodes all clear
10/30/12 dx revised T1N0M0 no chemo or rads
| | | | | Joined: Jun 2012 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 31 | Hi, Max:
Sorry you have to be on here but this is a good place to be. I had a partial glossectomy and neck dissection done in June 2010. You seem to be handling things very well, and this forum will only help. I didn't join the forum until earlier this year; and I wish I was on here when I got my diagnosis because I was pretty freaked out over the whole thing and felt so alone and helpless. I had 25% of my tongue removed; and remarkably, most of it grew back in the first couple of months. There is still a bit of a divot, and eating from that side is not quite the same. But otherwise, speech is good. Eating anything other than soft foods was not possible the first week or so after the surgery, but now I can eat anything. I'm not the expert on all things medical, but I can give you an experiential point of view when you need that. Best of luck to you!
Tim
Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
| | | | | Joined: Jun 2012 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 31 | Now that I think about it, I have to agree.....dairy products do seem to taste better. I always had a sweet tooth, so luckily that wasn't affected negatively! Soda/caffeine products don't taste as good, and I wasn't drinking much of them prior, anyway. My wife and I do enjoy a glass of wine now and then, and it definitely tastes even better now.
Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
| | | | | Joined: Oct 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I am surprised they aren't doing any chemo or IMRT. I was looking at the other posters on this particular post and all of them that have not had recurrence had chemo or IMRT at least. The one who did not had a recurrence a year later. Just an observation.
Thoughts on this from anyone else? I would think they would hit it hard the first time because of the aggressive character of this disease.
Kathy
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | Joined: Dec 2011 Posts: 126 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Dec 2011 Posts: 126 | They might re-evaluate their treatment plan after surgery. I know for me, they originally told me no chemo and maybe not radiation, but after surgery they changed their minds because of the lymph node involvement and the fact that the tumor was poorly differentiated and deeper than they originally thought. It's hard for doctors to tell exactly what they are dealing with until they get in there.
Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
| | | | | Joined: Jun 2012 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jun 2012 Posts: 31 | Kathy:
I've wondered the same thing. I thought I was getting off "easy" just having surgery and no other treatments the first time; but in retrospect, I wonder if I would have had the recurrence had it been attacked more aggressively the first time. However, I don't want to sound like I'm doubting my surgical oncologist, everyone told me he's the best in the San Antonio area.
Tim D., 43, married (Maurine), San Antonio, TX. Two-time OC survivor, first diagnosis May 2010 - partial glossectomy + neck dissection (17 nodes), recurrence Jan. 2011 - chemo + 2nd neck dissection (18 nodes) + radiation, completed treatments 4/28/11, PET/CT 12/23/11 - clear, scans 6/29/12 - clear
| | | | | Joined: Sep 2012 Posts: 58 "OCF across the pond" Supporting Member (50+ posts) | | OP "OCF across the pond" Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 58 | Thanks everyone for all your comments and support! Much appreciated. I am getting a bit confused now. They haven't done a test for HPV yet. They said they might do it at the point of surgery. People say that if HPV is positive then I would need radio and chemo before surgery? Is it correct? How come they haven't done this HPV for me in advance? 
25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm)
15/10/12 - operation: partial glossectomy + neck dissection
17/11/12 - operation: excision of the tongue scar (or extensive biopsy)
26 y.o., non-smoker, social drinker
| | | | | Joined: Sep 2012 Posts: 58 "OCF across the pond" Supporting Member (50+ posts) | | OP "OCF across the pond" Supporting Member (50+ posts)
Joined: Sep 2012 Posts: 58 | Hi thanks for your message. It seems from your signature that you had no chemo and no rad and you have had no recurrence since then? Is it correct?
25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm)
15/10/12 - operation: partial glossectomy + neck dissection
17/11/12 - operation: excision of the tongue scar (or extensive biopsy)
26 y.o., non-smoker, social drinker
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