| | Joined: Mar 2013 Posts: 1 Member | OP  Member
Joined: Mar 2013 Posts: 1 | I'm not sure if I'm writing in the correct area...new to all this. I have been home from the hospital for a week now with tongue cancer. They removed a portion of the tongue and the report came back good...Dr. appt yesterday said they got it all. There were 3 cells and one they said was aggressive but all came back good. I just got a call and now they want me to do radiation which sent me in a tail spin...advise...help...any suggestions?
Last edited by ChristineB; 03-28-2013 04:13 PM.
| | | | | 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 | Welcome to OCF! Sorry you have had to go thru surgery. Its good the you have found this forum for correct medical info and support.
Best thing to do is to be treated at a major cancer center. I hope you are already at one. As with anything a second opinion is also a good plan.
Every patient is slightly different and responds to everything in their own way and can have slightly different treatment plans. If you are unsure, go for a second opinion. Radiation is not easy but it is doable. If the margins were clean the doc probably is advising rads to make certain every single cancer cell is eliminated. You dont want to do all of this again. As far as your recover goes, try to have a high protein diet to help speed the healing.
Best wishes with your continued recovery and good luck with everything!
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 2011 Posts: 117 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2011 Posts: 117 | WELCOME
I am a 2 year tongue cancer survivor. I had surgery to remove 75% of my tongue and had radiation treatment as a precaution. As Christine says, you do not want to go thru this later on down the road. Radiation treatments suck, but you can get thru it. We are all here to help you with lots of advice and tips.
I am also in Illinois. I have sent you a private mail message as well.
Wishing you the best.
Ingrid
DX 12/6/10 of T3 SCC Tongue.
Surgery 1/3/11 was hemigloss & forearm free flap, midline mandibulectomy, Neck Disection-All nodes clear.
Ended rads 5/11/11. Taste buds back to about 80%. PEG removed 4/5/12, experimenting eating real food again. If I can do this, so can you !! Stay Strong.
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | Hi Bk - Glad you found this great place to be! My son had surgery and then radiation. Everyone reacts differently and some people just sail right through with hardly any problems, and others, like my son have it pretty rough but it is doable. I think it really depends on a lot of things like the kind of health you are in and your nutrition and hydration. One of the residents working with my son's ENT told me that the ENT was known as being very "aggressive" and I'm sure glad he was because my son has been cancer-free for 6 years, now. I hope you are at a good Comprehensive Cancer Center where there is a team approach and they all decide the best course of action in each particular case. You could check out the main pages of this forum and it might help you put together some questions for when you see the doctor or for anyone here. If you bring someone with you it helps you to remember what was said so you can check back with each other later. Let us know what happens.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | Joined: Sep 2012 Posts: 381 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Sep 2012 Posts: 381 | Hi BK, I also had just over half my tongue removed. I was told to expect chemo and radiation as my PET came back positive for lymph node involvement. My surgery went extremely well and it turned out all the nodes were negative for cancer. I was shocked when they gave me the option of doing radiation, due to clear nodes and margins, so I had the reverse shock from you. I elected not to ultimately, as I wanted to keep that "bullet in the gun" in the event of a recurrance.
Everyone here is a great support. I have no doubt you will manage, although it is never easy. Best wishes.
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: Mar 2013 Posts: 8 Member | | Member
Joined: Mar 2013 Posts: 8 | Hello Ingrid-
I just found this site this morning and as I am going to Mayo in three weeks for a tongue biopsy (hopefully benign but doubt it), and will then return to Mt Prospect, and if I need follow up treatment will have it done here. Anyone you recommend?
Thanks. If you could supply me with any other local info, I would appreciate. I go to Suburban Ear Nose and Throat in Arlington Heights but my son wants my procedure there. Thank you! | | | | | Joined: Mar 2013 Posts: 8 Member | | Member
Joined: Mar 2013 Posts: 8 | Hello-I am in Illinois and wondering where you are getting your treatment. Thank you. | | | | | 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 | Pamy, here is a list of the country's best treatment facilities. You will want to go to a top cancer center. Cancer Centers
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 | | |
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