| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | In response to Jerry and Christine,
Sorry to be confusing, I see what you are saying. In April of 2007 was a biopsy and the 3 after were each a partial glossectomy. The last being the most invasive.
Christine,
I am only treated surgically now. From what I understand that is usually what is done with T1.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | 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 | Still a tad confused...what prompted them to do 3 additional surgeries especially after getting the all clear after the 2nd and then after the 3rd?
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 |
Suzanne
Ok, now I understand. Sorry.
I was also Stage 1 but the location of mine made me do the radiation and chemo. Then it came back and I ended up having surgery, but it was no where near what it would have been in the beginning.
Consider yourself very lucky to have had only surgery. Much easier on the body to recover from than rad and chemo.
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 2008 Posts: 309 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 309 | i have been asked that too - any ear pain? been asked both before surgery by the surgeon and then by the radiation oncologist ...
ear pain is a "symptom" of oral cancer activity.
HOWEVER it can also be a side effect of some treatments, including surgery so one wants to report it but not be worried about it unless the doctor is.
someone else may know more reasons why they ask it DURING or POST treatment ... i am not positive the above are the only reasons.
Rita - Age 44
wife, mother of 4 - ages 3,16,21,24 & grandma to 1
(R upper) Maxillectomy 8/8/08 - UW / Seattle, WA.
===============================
"Those who think by the inch and speak by the yard, should be kicked by the foot."
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | David,
The other surgeries were promted by white lesions on my tongue. I actually have changed doctors since. I felt as if my first doctor loved to do surgery and never let me ask questions. It was always cut...cut...and more cut. The doctor I see now is ok. She has yet to do any surgery. I still feel pain sometimes which worries me but every time I see her she says all looks ok. Does that explain a bit better?
I've noticed nobody mentions where they go for treatment except one person who has it in their signature. Is this something that is not to be discussed? I think I read that when I first signed up.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2008 Posts: 551 | Suzanne, We do discuss where we're being treated, its not a secret or verbotten I was treated at Dana-Farber in Boston, for example. - Margaret
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Thank you for the info Margaret:) I wasn't sure. I go to Fox Chase Cancer Center. Does anyone in the PA area think that is best place to go? I started at University of Penn in Phila and things didn't work out my doc there.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Suzanne,
Fox Chase is a comprehensive cancer center and an excellent facility. I�m from the Allentown, PA area and was treated at Lehigh Valley Hospital, another excellent facility. There are a few of us on the forum that were treated at these hospitals. I went to FCCC for a third opinion and was very confident in the doctors and facility. I went for a second opinion at the U of PA and had issues with the doctor I saw � it could be the same one you saw as he has a reputation for being difficult. You don�t want to mention publicly on the forum anything negative about a particular doctor. I�ll send you a �personal message� with more information
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | There are other ways to do biopsies that don't involve a knife -- There's punch biopsy where a small, round sharp tool is pushed into the flesh to make a plug, the plug is snipped off and the hole heals without stitches -- There's also FNA, where a fine needle is pushed in to collect a much smaller sample.
The attractive thing to the doctor about the knife biopsy is that whatever it was is usually gone!
I now have ear pain following my free flap and I believe it is from a sensitive spot in BOT or throat -- If I touch it, my ear hurts -- I suspect that some nerves got crossed when the Cutthroats were doing their thing because there is also scarring in that area.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Aug 2008 Posts: 716 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 716 | I had ear pain and as the tumor grew the pain increased. When they removed the tumor the ear pain disappeared.
My tongue bothered me for months with spicy foods before the tumor was ever seen.
My symptoms before anyone noticed a tumor was:
earache
burning sensation on tongue (where tumor eventually developed)
my teeth on the left side felt like they were going to fall out
Last edited by Ray1971; 12-08-2008 09:07 AM.
7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
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