| Joined: Apr 2009 Posts: 22 Member | OP Member Joined: Apr 2009 Posts: 22 | Thank you everyone for your replies. I have been away from the sight to study for the NCLEX which is my nursing license while my tongue healed from the partial glossectomy. The partial glossectomy came back from patho with no further evidence of carcinoma. However, since the original patho report stated there were words like, "perineural and microvascular invasion" it has been highly suggested to me that i follow up with radiation therapy.
I have a CT on June 29th and then find out my treatment plan. I informed that there will be somewhere in the 30-33 treatments using IMRT.
Thanks again, Kenny
Dx: SCC lateral tongue April 09, Stage T1M0N0 PET scan clear April 09 Partial glossectomy April 09, no carcinoma present IMRT started 7/9/09, finished 8/26/09 PEG inserted 7/30/09 PEG removed 9/25/09 ER Nurse
Keep the rubber side down....
| | | | 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 | Best of luck with the scan results and any further treatments. 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: May 2009 Posts: 113 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 113 | Kenny, I am new to this whole new world as well...let me share my 2 cents with you. I am 30 good health, no history, non-smoker! I have perplexed everyone! Had SCC on my lateral tongue...my ENT who is VERY good took 1 look did the biopsy and had me on the books for a partial glossectomy the following week. 3 different patho's looked at my biopsy before declaring it cancer...Actually got the confirmation the night of my surgery! That was the course of action! My ENT said I might want to look into Rads but since my wife works for him I could "monitor" it very closely! Like David said this is a very aggressive type of cancer....with that said it took 2 months and it popped up in my left neck very very slightly! You could hardly feel it and it didnt show up that well on a CT so I had a PET. The PET showed a slight glow then it was a decision to either have Rads or a Neck Dissection. After seeing what the rads road was like I elected to have the neck dissection which was exactly 3 weeks ago, they cleaned out 5 nodes with all clean margins! HOWEVER! The infected node showed "extra capsular spread" which is basically as bad as the parineural invasion. So my ENT went from saying lets do the surgery and monitor it to you need to look seriously into radiation! Even though I am clear of all cancer with good clear margins I figured I better listen. I went to 2 local RO's who were both very hesitant to give me a straight course of action....I got Pissed off and went to 1 of the best Cancer centers in florida and saw a specialist! He didnt hesitate 1 bit! Said 33 treatments on left neck, 2/3 tongue and right neck with concurrent Cisplatin X 3! This guy has been at Moffitt for 19 years in fact Davidcpa did his treatment there! Not only did he give me his advice he will present my case to a tumor board on tuesday then call me with a final decision! I was trying my hardest to take the "easy road" then finally realized that 3-4 months of HELL is going to be better than having to chase and patch the rest of my life! Not saying that doing all this is not going to make it never come back but it greatly reduces any recurrence! I am still on the fence with the Chemo being that I did have the surgeries to remove everything but now I am totally convinced that Radiation is the right thing to do! Who knows maybe if I just had radiation after my glossectomy it might have never showed up in my neck.....Never know! But I do know I am done taking this lightly! I have my mind set and am ready for the battle! I am convinced that being prepared mentally is half the battle! Do your research, start preparing your body and mind and go get the radiation! Everybody I have spoken to (which has been a lot from florida to NY) has said to me...."TREAT THE PRIMARY"! I have heard that so many times I finally gave in! I will be starting my radiation in about 2 weeks....whether or not I chose to go with the concurrent chemo is still up in the air! Most likely I will have 2 more opinions on that as well! I am stubborn, hard headed and very very strong willed...which in 1 way is a good thing but accepting reality is more important. My advice and nobody has went back and forth with this more than me is get the damn radiation. I am going with this plan as well. Yea rads is a 1 shot treatment however hopefully if this ever comes back in that area they will have a new, improved better way of treating it! They have come so far in the past 5-10 yrs and its only going to get better! Live life to the fulliest everyday. This was a huge wake up call for me, I enjoy everyday and do not let the small petty stuff bother me anymore! Except for the fact that I am hearing now that they are going to replace my position when I go out for treatment.....ANYONE KNOW A GOOD LABOR LAW ATTORNEY IN SOUTH FLORIDA.....LOL! Keep your head up bro and let us know whats going on.
30 yr old M non-smoker (stuborn ass italian) SCC left side Tongue 2/17/09, Partial Gloss. 2/25/09 Left ND 5/20/09 10 nodes, 1 pos (1.7cm w/xtra cap spread) Finished Rads IMRT X 33 8/18/09 (70gy)No PEG, No Chemo "On the long road to recovery 1 step at a time" | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Jim..Hooray! I am soso glad to hear that you went to a CCC for the best advice available, that you are no longer put in the position of having to make this huge decision with inadequate information, and that you seem, now, satisfied that you are on the right course and are focused. You obviously have come a long way in your realization of the seriousness of this disease and the need to treat it with all the ammunition available. Good for you! Now.....go get 'em! Dig deep, and you'll get through it. Consider it a journey. XO
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | August said it Jim..hooray man I was and am hoping for the best for you.
Harley, listen to the very intelligent people above and notice the trend...get the best care possible, no matter the hassle involved as you may only get one chance at beating this thing before it ends your life. Best of luck to you my friend.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | It's that name Jim. LOL we always think things thru then leap. I'm glad you made the decision your way. Good luck. This journey is only as bad as you let it be.
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: Apr 2009 Posts: 22 Member | OP Member Joined: Apr 2009 Posts: 22 | Jim, It looks as if we will be having radiation about the same time. I hope all went well today. Good luck and God Bless. Kenny
Last edited by HarleyKenny; 07-01-2009 02:09 PM.
Dx: SCC lateral tongue April 09, Stage T1M0N0 PET scan clear April 09 Partial glossectomy April 09, no carcinoma present IMRT started 7/9/09, finished 8/26/09 PEG inserted 7/30/09 PEG removed 9/25/09 ER Nurse
Keep the rubber side down....
| | | | Joined: May 2009 Posts: 132 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: May 2009 Posts: 132 | Kenny and Jim -
I'll be in there with you doing radiation very soon! Good luck to both of you...sending positive vibes your way...
Chrissy
Stage 2 SCC upper right palate Hemi-palatectomy and maxillectomy 5/28/09 Six teeth gone IMRT x30 starts July 13. Completed 8/26/09 Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | Joined: Nov 2007 Posts: 212 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Nov 2007 Posts: 212 | I'm with August. Love, love, love Dr. Weber's skills.
Cancer of Tongue, SCC early Stage 1, Dx 3/13/07, partial glossectomy 4/14/07 found no residual carcinoma and a granular cell tumor with pseudo epitheliomatous hyperplasia.
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