| | Joined: Jul 2010 Posts: 27 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2010 Posts: 27 | Hi. I'm 52, male. SCC, sole symptom was enlarged lymph node, right side of neck. Was small, since it's been biopsied and cut, it's the size of an egg. Tuesday, I had a bilateral tonsillectomy and various scoping and biopsies around my head. They found the primary cancer site in my right tonsil, which had eluded the CT and PET scans. I have seven weeks of chemo on Mondays and radiation M-F coming up. Get fit for mask on Friday. Had to have two teeth extracted two days after Tuesday's surgery. I'm recovering from all that really well, I think. Waiting for tests to see if I'm HPV-positive. I smoked for 19 years, 1973-92; and am a recovering alcoholic, having quit drinking in 1990. I became a marathon runner, finishing my 22nd full marathon on May 30, four days after my official diagnosis. I changed my lifestyle and took care of myself; sure didn't see this coming. The radiation doc said Wednesday that my chances of survival are very, very good. My attitude is that I am cared for, I always have been, whether I've recognized it or not. I am lucky to be within driving distance of a top cancer center that does a lot of head and neck cases. I have a great, supportive wife (though I'm worried about the impact of this on her), good disability benefits and more support overall than I imagined possible. I'm going to be the best cancer patient I can be. Learn what I need to learn, work at everything I need to work at � dental care, swallowing, getting calories down, moving around as long as I can. I've trained for marathons; this will be harder and hurt more, but I should be as well prepared for it as anyone can be. I will do my part every day and turn the rest over to prayer, support and the med team. If that sounds brave, it's only because I'm scared silly and have no idea how else to approach this.
Randy, Stage 3 tonsil SCC, node involvement, HPV-positive. 7 sessions of Taxol-Carboplatin, 35 rads finished 9/8/10. Post-TX PET and CT 12/1 showed "no metabolic evidence of residual or recurrent disease." Yay!
| | | | | Joined: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Randy:
Not sure if it's a good thing to say "Welcome," but I'm glad you found this forum because it is fantastic. As you can see, my SSC was like yours, and found accidentally because the doctor I went to for a small swollen place under my right jaw on my neck said it was a swollen lymph node from a sinus infection. I went to an ENT doctor and was told the same thing; later when I called to say it was still there and still swollen, the nurse told me I was paranoid and to not worry. Yeah, right! I finally developed sore tonsils and the ENT doctor said he would go ahead and take them out. Thus, the SSC was underneath and had gone to some nodes. So, as you probably know, you have to be agressive at times. You sound like you are accepting your news with a very positive attitude, which is your best asset. When reading other posts on this forum, you'll see the wonderful success stories, plus all sort of hints involving your treatment and eating issues. Glad you found us and keep posting your progress. Good luck.
julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer  | | | | | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 583 | Welcome Randy!! You have come to the right place for help and support. Your head is in the right place. Always think positive. We were all scared at one point of our cancer treatment. This is a process that you take one day at a time. There are so many here that can answer any questions you may have as you walk through your treatment. Take care..Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | | | | Joined: Jul 2010 Posts: 60 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jul 2010 Posts: 60 | Hi Randi--I'm in about the same place as you are, as I will begin radiation treatments in 2 weeks or so. I also have tonsil cancer and can't believe I never saw the lump on my tongue where it had spread. I'm moving forward as I know you are/like what you said about being "the best cancer patient you can be."
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 2010 Posts: 7 Member | | Member
Joined: Jun 2010 Posts: 7 | Hi Randy,
I'm probably not qualified to say welcome, as I only just got here myself. I just wanted to say that your attitude sounds spot on. It's good to be strong, but it's okay to be scared.
Cheers
Jules
Male 40 YO
SCC RHS tongue | Partial glossectomy & MRND (levels I - IV) 6/2007, 35 rads 9/2007, no chemo
Recurrence 4/2010, currently T1N2aM0 | Hemi-glossectomy with RFFF and RND 24/7/2010
Gorgeous wife Lynda, daughter Sienna and another on the way! (there's good stuff too) | | | | | Joined: May 2010 Posts: 135 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2010 Posts: 135 | God Bless You, Randy. I'm thinking of you.
D
Aunt diag. 2/4/10 with SCC Stage I/II on left side of tongue. Surgery 2/19/10 part. gloss./neck diss. on left side/free flap from chest muscle. TI/II,NO,MO. Clear margins with perineural invasion. Started rads 4/8/10 - 35 treatments, finished 5/26/10.
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hey Randy!
You have a great outlook- very positive and calm. Wishiing you a speedy recovery from all of this. So sorry you are going through it! This is a very supportive group. Everyone here really helps each other with all aspects of this disease. I found it to be a great resource of information about what to expect and also as a support system.
Feel free to post any questions or concerns - or come here to just vent. I found it to be a big help espcially when Iw as going through treatment.
Kate
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | 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 | Randy, You probably have a 70% chance that you will test positive for HPV. Let's hope so. Just eat eat eat eat all your favorite fattening things starting now and don't stop until I say so!!!
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: 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, Randy. I love your attitude. A positive outlook helps to get thru this. Its very normal to be scared going into this. Everybody is scared of the unknown.
Best wishes with your 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: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | Hello Randy,
I am in Michigan also. Where are you being treated? I'm on the west coast in South Haven and was treated at Lemon Holten CC in Grand Rapids.
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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