#27345 04-17-2005 11:35 AM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2004 Posts: 76 | Haven't been here in awhile other than to "peek" & occassionally wish someone well but what would I say to someone like myself? Someone that just this morning stuck her tongue out & had a look at it in a visor mirror and saw, not one white lesion similar to the first SCC RX but two? Along with a healthy sized black hole just behind it. I just had surgery in Dec & was declared cancer free (mind you they were concentrating on the thyroid then) Who do I call? My H & N surgeon who hasnt seen me since Feb follow up? This must have just come up as I have had ear pain & sore throat but thought it was from air conditioning as I started a new office job at the Fire Dept three weeks ago. I have had a look in my mouth back then & saw nothing. Now I have thick tongue(like bees are stinging), painful lesions that my teeth irritate & a tiny black spot at the back underside left of my tongue, my glossectomy last year took the right front underside and back about 1/3, was very successful, but I have never been really confident or sure how or with who to follow up PROPERLY? Any advice folks? The cancer center isnt too far from my home (40 mins, but no-one seems to want to refer me there, instead I see Drs who are on long wait lists and hours away.
01/04 SCC of tongue base, T1N0M0 03/04 Partial glossectomy 04/04 Rad 12/04 Throidectomy(follicular cancer)
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#27346 04-17-2005 12:47 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | right lady Head and neck clinic tommorow no messing appointment ASAP then report back here, you KNOW what you have to do DO IT NOW Sunshine.. love and hugs from a BOSSY Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#27347 04-17-2005 01:41 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2004 Posts: 76 | Helen Thank goodness you are bossy and wonderful, sometimes I need to give my head a shake!I pray that I can say in three days at most.."it is only a canker sore; the path results say so!" LIFE WOULD BE GREAT IF that was the longest we'd have to wait IF this disease was easier to detect early IF no-one had to know the fear of leaving behind their loved ones IF we tried SO HARD NOT to be hypochondriacs but that was ALL we were, instead of PATIENTS! Thanks for the well wishes & I am off to the H & N Dr in the morn. Will update soon Maria
01/04 SCC of tongue base, T1N0M0 03/04 Partial glossectomy 04/04 Rad 12/04 Throidectomy(follicular cancer)
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#27348 04-17-2005 01:45 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Okay.... Call your H & N surgeon and get in ASAP, but insist on a referral to the cancer center. This is your life. Don't let the docs mess around with it. Rainbows & hugs from Bossy #2  , Rosie P. S. Whoops! We must have been writing at the same time. I posted this, then immediately saw your reply to Helen, so I added this P.S. Glad you took her advice.
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#27349 04-17-2005 03:29 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2004 Posts: 76 | Rosie, I must have been reading your journal when you wrote this;yes we were on the site at the same time, I am taking all the advice I can get:Thank You for responding like Helen did with positive GO GET EM GAL attitude! Take care Maria
01/04 SCC of tongue base, T1N0M0 03/04 Partial glossectomy 04/04 Rad 12/04 Throidectomy(follicular cancer)
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#27350 04-17-2005 03:47 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2003 Posts: 1,384 Likes: 1 | Tiamaria, Yes get it checked out and while you are at it ask them about Thrush, in fact get a prescription for Nystatin swish (mouth rinse).
I will hope and pray it is nothing worse.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#27351 04-18-2005 08:22 AM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Mar 2004 Posts: 76 | Had my morning appointment and was SO surprised to not be able to FIND the darn white lesions, along with my dentist. I got a tongue scraper for the top of my tongue and he will forward this info to someone (between the dentist and the H & N surgeon)who will schedule me for every three month dye analysis, to ease my worried mind. Hate to say it but I am not at ease, don't know why the lesions that were so hard and obvious yesterday have disappeared inside my tongue? The "black area" turned out to be blood vessels. Truth be told I wouldnt know what to say, take care of your health, know your body, seek medical attention, but then what? The signs deceived me, it seems, and I feel foolish upsetting myself and my partner.I pray it is nothing and feeling silly is a small price to pay for getting checked out.(No biopsy though.)
01/04 SCC of tongue base, T1N0M0 03/04 Partial glossectomy 04/04 Rad 12/04 Throidectomy(follicular cancer)
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#27352 04-18-2005 09:02 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Maria Welcome to the club, I think all of us at some time have fled panic stricken to the H&N docs, only for it to be something they are quite at ease about, be GLAD better a false alarm than a reoccurance.. Sunshine... love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#27353 04-20-2005 05:44 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2003 Posts: 928 | Hi Maria ... I for one am delighted to know you have dissapearing lesions ! Stay vigilant woman! take care Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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