| | Joined: Oct 2012 Posts: 7 Member | OP  Member
Joined: Oct 2012 Posts: 7 | Hi all,
I survived SCC (Stage II) on the base of my tongue left side in 2004. Went through surgery, radiation and chemo. Completely caught off guard this week with the diagnosis of SCC of the right buccal (cheek). It's about 2 cm. PET scan and CT scan scheduled for Wednesday. I am so scared! I do not want to go through this again!!!! My question is the mysterious bump I eventually had biopsied had been in my mouth for 3-4 months. Now I feel so stupid for waiting. I am always so cautious with everything to do with my mouth because as some of you may experience, the residual effects of radiation cause continuous infections and thrush and I am always right on top of it. I thought I was grinding and biting my teeth. Anyway, so very scared it has spread... Any words of encouragement would be so helpful! Thanks for listening.
8/20/04 Dx'd w/ SCC - Stage II-III L BOT. 2 surgeries. No clear margins. 33 IMRT, chemo. Clear PET
10/26/12 Dx'd 2-3 cm SCC buccal lesion. Non-Smoker, Non-Drinker, Healthy lifestyle.
| | | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,406 | Hello nine lives: I'm so sorry to read about your reccurence. Please don't beat yourself up about waiting though. The important thing is that you know what you're facing and you've been through worse before. Please keep us informed as you go along. Everyone here is on your team.
I'm sure you're going to get all kinds of great advice and support. You've come to a very loving and supportive place!
My thoughts are with you.
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi there ... Ditto to what David said - the other good thing is I think rads has improved in the last eight years. When you say base of tongue do you mean under your oral tongue or down your throat? Usually base of tongue is in the throat, not that it makes a big difference one way or another but I'm assuming you had a neck dissection first time out as well hopefully this is localized and hasn't spread. If you got though it once you'll get through it again, and we'll be here to help you along the way. Take care and welcome.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2012 Posts: 7 Member | | OP Member
Joined: Oct 2012 Posts: 7 | Hi Cheryl,
I mean under my oral tongue. Sorry, it has been so long I probably need to dig out my medical records so I can describe more accurately. I did not have a neck dissection. Just a portion of my tongue removed. Unable to get clear margins. So my treatment was 33 IMRT and Cisplatin x 2. Probably not a candidate for radiation again right? Thanks.
8/20/04 Dx'd w/ SCC - Stage II-III L BOT. 2 surgeries. No clear margins. 33 IMRT, chemo. Clear PET
10/26/12 Dx'd 2-3 cm SCC buccal lesion. Non-Smoker, Non-Drinker, Healthy lifestyle.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | There are a number of us who have had radiation more than once. It really depends on the field to be radiated, how long it has been since previous radiation, etc. Also you may have had "old style" radiation and now there is IMRT which is much more accurate. Make sure you investigate this option. I wouldn't be here today if they had not done the 2nd course of radiation.
Good luck, and don't forget - we are here to walk every step WITH YOU.
Donna
Last edited by Pandora99; 10-28-2012 10:26 PM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | 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! So glad you have found this place to help you with info and support. A recurrence is the thing all of us survivors fear the most. Its can be paralyzing when it happens. The very best thing you can do is to not hesitate, take action to get rid of the cancer immediately. I know you are worried because you delayed but by inaction it doesnt mean it is not treatable.
Ive had OC 3 times and have been fortunate enough to survive. I have only had radiation once but there are several others here who have had it 2 times. It has even been done a 3rd time for one of our members.
Dont give up! If you are not already being treated at a cancer center it may be a good idea to go to one. They have the most experience with oral cancer and have a team of specialists working together on your individual case.
Best wishes!!
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 | Have they discussed a new treatment plan?
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: Oct 2012 Posts: 7 Member | | OP Member
Joined: Oct 2012 Posts: 7 | Thank you all! Such a support and really helpful information. Grateful to you all! My ENT whom I love and did the first surgery 8 years ago plans to do surgery. Hoping for clear margins. PET and CT scans will happen this week and then hopefully surgery, but of course you know the results of the scans may change the course. My oncologist I had previously I know is a great doctor but she really lacks "bedside manner" and did not always listen to my family who was advocating for me and that lead to some real issues. I think based on all I have been reading on this forum, I am going to get a second opinion ASAP. I really would like to go to a Cancer Center. I have Mayo Clinic and MD Anderson, and Cancer Treatment Center in my area. However, not sure if they will accept my medical plan - Humana PPO which is a medicare advantage plan. So will be researching this week. So that's where I am at. Thank you so much. Any and all advice or comments are so helpful to me.
8/20/04 Dx'd w/ SCC - Stage II-III L BOT. 2 surgeries. No clear margins. 33 IMRT, chemo. Clear PET
10/26/12 Dx'd 2-3 cm SCC buccal lesion. Non-Smoker, Non-Drinker, Healthy lifestyle.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Md Anderson is top notch - if I lived in the states - (I live in Canada and was treated at princess Margaret - also top notch) I would go there - particularly after a second primary. Oral cancer can be deadly and aggressive - pick the best plac that offers the best treatment outcome. As others have said you can have more than one round of rads - I know someon who's had 4 or more recurrences and her RO has found a way to give her rads each time. She's at md Anderson as well. She's finally got an all clear. Hope your insurance approves!
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Oct 2012 Posts: 143 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2012 Posts: 143 | Hello and welcome to OCF! Wishing you all the best as you seek the best care for you. Based on what happened to my mother-in-law I would take an aggressive approach. Good luck! Stay healthy most specially before your next treatment.
Joyce March 1940 to January 2014
A wife, a mother, grandmother and great grandmother.
She fought oral cancer from late 2009 to Early 2014.
2 Timothy 4:7 I have fought the good fight, I have finished the race, I have kept the faith.
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