#77769 07-30-2008 08:54 PM | Joined: Jul 2008 Posts: 15 Member | OP  Member
Joined: Jul 2008 Posts: 15 | Hi - I'm Tina. I had a partial glossectomy in March of 2007 after I discovered a small growth on the underside of my tongue. I was told I was lucky, they got it all in stage 1, no additional treatments were needed. My oncologist (a wonderful women who had treated my Mom for pancreatic cancer ten years ago,) confirmed the ENT's dx and treatment plan and told me to get monthly screeings. I visited my ENT on Monday and he found a suspicious hardening of the tissue in my throat. (What the heck does that mean?) I am waiting for a date for a biopsy - probably in about 12 days. I'm scared. I found this site and am just happy to talk about it and hope I can educate myself. CMB
Partial Glossectomy (Right) March 2007, Clear Margins, SCC T1N0M0
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Joined: Oct 2006 Posts: 383 | Tina:
I don't know what you are up against entirely or your ENT's thoughts but if you can have a PET scan or PET/CT I would suggest it. When I had my reccurence my ENT biopsied twice (One brush and once surgical) and found nothing. He was not satisfied and refered me to another "Team" through the University. My new Surgeon immediately sent me for a PET/CT which detected a much larger tumor than the first occurence embedded deeper into the tissue. I actually had a PET/CT this morning as a "precaution" (Due to some unexplained weight loss and a very caring wife and surgeon) and one of the techs stated that most Dr.'s are feeling more comfortable with scans than with traditional procedures at this point.
(By the way, today's scan found nothing!! YEAH)
Just a thought.
Best Wishes,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | 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 |
Hi Tina:
Welcome to OCF. Its a great place to find info and moral support. The unknown is very scary. There is a saying here on OCF :its not cancer til they say its cancer". That really is so true. Only the biopsy results will tell you for sure if you have cancer. Hopefully you will be able to get it done soon and then get the results quickly. Try to relax, waiting is the hardest part.
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: 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 |
Sometimes cancer doesnt appear on a PET scan if its small. My friend's husband had a biopsy and it was positive for tongue cancer but a PET scan done a week later showed nothing. With all the false positives, I wouldnt be comfortable with only a PET scan. There are way too many things that can light up such as scar tissue or an inflamation. A biopsy really is the best way to tell for sure.
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 | It sounds like you are in capable hands and lets hope your biopsy yields nothing remarkable. If you are not satisfied you can always seek another opinion but lets see what the bio says.
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 $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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Joined: Jul 2008 Posts: 15 | Thank you all for your kind and wise words and for your quick response. I got the call today, the biopsy is scheduled for the 13th of August - these will be the longest two weeks of my life. With my first dx the ENT knew right away ... Do you think I should contact my oncologist right away or wait for the biopsy results? I want to be proactive, but I do not want to be a lunatic patient. CMB
Partial Glossectomy (Right) March 2007, Clear Margins, SCC T1N0M0
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Most of us have had to wait at least a week to get bio results so you were lucky to get them back from your ENT so quickly but I wouldn't count on that being the norm. I don't know how busy your oncologist is but maybe you could try to get an idea of when the bio results would be available and schedule an appt accordingly but remember most likely nothing you will be told re the bio results will be guaranteed.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | You should let your oncologist know how apprehensive you are and that you want to be contacted as soon as the biopsy results are in. In some cases they can be available within a few days and the results can be faxed to the doctor right away.
Good luck.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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