| | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Hello/one month ago I found a lump on my tongue/have had numerous doctor visits and have been tentatively diagnosed with 2/3 tonsil cancer. Am unsure of the staging/know I will have a pet scan in about a week. If the cancer has spread to my tongue does that count as an M/ie I really have stage 4. Will see my dr next week for the radiation planning session/know I am in good hands at Johns Hopkins. I can use support!
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Susan
Welcome to OCF. If cancer is in 2 places it does not mean it has spread. It could be in 2 completely seperate places at the same time. My first ime it was in my cheek and a completley seperate spot behind my molar. Once you get the PET scan done then the doctors can stage it. Best of luck to you.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | If you were Dx'ed with cancer in the tonsil then why didn't they comment on the bump on the tongue? Also not sure what you mean by "tentatively" Dx'ed? Kinda like pregnant, you either are or you're not. Only way to Dx cancer in the oral cavity is through a biopsy and a pathology report.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | In the TNM staging system the M stands for DISTANT metastasis. That would mean something away from your mouth (primary site and the T part) and cervical nodes in your neck (which represent the N part of the staging description).
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 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Thanks/will get more info when I go for the pet scan.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Thanks/things seem so overwhelming at this point.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | I've seen three different doctors/and they say 2 or 3.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Thanks for your welcome, Christine. Are you eating?
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | susand. You can answer everyone in the same posting. It will keep things a little more organized, you do not have to reply with a brand new post to everyone that you wish to address in a thread which is essentially your thread of thoughts and ideas, just say David- blah blah, then, Brian- blah blah all in the same posting. As you continue on and your questions or comments remain in the same general vein, stay on the same thread, no need to start a new topic in the same forum. So you are right now posting in the introduce yourself forum.... when you've been around a few days, and met some people you might want to move on to the treatment forum and start a long running thread there that you will maintain while you are in treatment, and so on. It just takes a little bit to get used to the system. Lots of people read your posts, and if everything about YOU is located in one area, people will get to know and understand your situation (and you) and you'll get better answers and develop better relationships as a by product.
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 2010 Posts: 60 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | ok/thanks/as you can see I'm very new at this. I read that you also had tonsil cancer in 98 and you give me a lot of hope. I know that I need to keep remembering that this is not a death sentence.
Susan/59/nonsmoker /tonsil cancer spread to tongue,stage III diagnosed 6/10, HPV+ T3,N1 Finished 35 radiation and 7 cisplatin 9/7/10.
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