| Joined: Jul 2011 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2011 Posts: 42 | Thanks folks. I'm recovering from the tonsillectomy, and the cyst/tumor removal. I went mostly tylenol free today. I guess the pain I went through was just a preview of things to come. Ben, thank you the link to your blog. I somehow managed to laugh, and almost spit up on my monitor a few times. You sound like me, a bit. After mowing the lawn, and drinking my first cup of iced coffee in the last 2 weeks, I feel great. I'm on-call for work, and I'm stuck in front of the computer working on some stuff remotely, and that's taking my mind off of things too. Going to investigate TORS. I'm afraid that if I use the RT card the first time, I won't have it available if I have a recurrence 
Age 35 non-smoker, non-drinker 7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed 8/9/11 - Corrected diagnosis of MEC @ BOT 8/17/11 - TORS to remove lesion 9/2/11 - Bilateral neck dissection. All nodes clear! Done! 12/13/11 - PET/CT scan clear | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Feb 2007 Posts: 790 | Hey Warren! I am 38 was 33 when diagnosed. I know it is strange to be worrying about cancer when you are right in the prime of life with a new baby etc. So unfair  Hoping you whiz through treatment and this becomes a minor pothole in the road of life. This is a great community of people who support one another. Kate B.
Tongue Cancer T2 N0 M0 / Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007 Surviving!!!
| | | | Joined: Jul 2011 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2011 Posts: 42 | I told the rest of my friends and family today via facebook. The support feels nice. It's still a little tough for me to tell someone in person.
Have an appointment with an RO tomorrow @ Georgetown/Lombardi CCC. Looking forward to a plan. Did my ENT make a mistake by superficially removing the tumor? It seems like this is not standard protocol, as this could present problems during RT. Hoping to get a scan soon to see if there is any more cancer in other spots.
Age 35 non-smoker, non-drinker 7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed 8/9/11 - Corrected diagnosis of MEC @ BOT 8/17/11 - TORS to remove lesion 9/2/11 - Bilateral neck dissection. All nodes clear! Done! 12/13/11 - PET/CT scan clear | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Warren - It really sounds like you are taking care of things and moving towards a plan. It is hard to tell people because often, even though they are very well meaning and do care about you, they don't know what to say, how to react or how to help. If you happen to think of ways you would like help, by all means, make a list so if they say "how can I help?" then tell them! My son hesitated to do this at first but he found that after he did, his friends were grateful for the opportunity to do something for him! About your question re removing the tumor, or if it could present problems during RT, I'm sure others here will weigh in on this. My son's Maxillofacial surgeon was known as an "aggressive" surgeon and the thinking was that RT would provide less chance of a recurrence in his case. Everyone is different with different circumstances, so be sure and ask your doctors whatever questions you have and mention any concerns you may have. Hope things go very well today with the RO appointment.
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi there. - as far as I know it depends on the surgeon, and tumor size, and location. But my tumor and 40 nodes were removed, then they offered me radiation and chemo even though they felt I was cured - and were certain They'd got it all. (their certainty has something to do with the type of surgery they do.). So I think the surgery prior to rads is okay - though they do want to give you time to heal. If it wasn't extensive surgery it should be okay in a few weeks, some make you wait 4 or 5. I had my radiation 5 weeks post op. But I had a 14 hour surgery with reconstruction. Try not to worry and good luck at your appointment. Look at it this way at this point there is less cancer or possibly no cancer left - less clean up work for the radiation to do (hopefull killing any microscopic cancer that might be left.. Treating this aggressively is good. Take care. And good luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jul 2011 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2011 Posts: 42 | I have some positive news to report. Based on what the RO saw, the pathology report, and notes from my ENT, he thinks this is the earliest stage of BOT cancer that he has ever seen in 34 years. I am LUCKY!
Still need to get scans done, and possibly a few nodes removed to check, but things are looking positive so far. The RO is suggesting TORS, and would like to never have to see me again. No radiation recommend at the moment. My appointment with the H&N surgeon is next Tuesday, so I guess I'll find out more then and after they present to the tumor board.
Age 35 non-smoker, non-drinker 7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed 8/9/11 - Corrected diagnosis of MEC @ BOT 8/17/11 - TORS to remove lesion 9/2/11 - Bilateral neck dissection. All nodes clear! Done! 12/13/11 - PET/CT scan clear | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Great news, Warren! Keep us updated. Hope everything continues to go well.
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | This is really good news. The core question to ask, since the base of the tongue contains all the nerves that control it and its major blood supply, is exact what does he expect related to any lack of range of motion or utility of your tongue might be impacted by his surgical approach. This is be minimum informed constant you should enter into this treatment with.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jul 2011 Posts: 42 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jul 2011 Posts: 42 | [quote=Brian Hill]This is really good news. The core question to ask, since the base of the tongue contains all the nerves that control it and its major blood supply, is exact what does he expect related to any lack of range of motion or utility of your tongue might be impacted by his surgical approach. This is be minimum informed constant you should enter into this treatment with. [/quote] Absolutely. I'll be asking many of those questions, though watching this video was informative, and there are quite a few other TORS videos on YT as well. TORS tumor removal at BOT (not for squeamish!)
Age 35 non-smoker, non-drinker 7/1/11 - Diagnosed with SCC @ BOT, stage 1, lingual tonsil & cyst removed 8/9/11 - Corrected diagnosis of MEC @ BOT 8/17/11 - TORS to remove lesion 9/2/11 - Bilateral neck dissection. All nodes clear! Done! 12/13/11 - PET/CT scan clear | | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | Congratulations, Warren! Let us know how it goes. What a relief for you and your wife! It sure can be a bit of a rollercoaster ride. I'm glad that it looks like your ride is going to be a quick one!
Sandy
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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