| | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Go Connie!!! Run...run like you just stole something and are being chased by a police officer!!!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | 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 | Me too - 40 removed 1 positive - rads and chemo. After 14 hrs of surgery. MD is a top ccc go there if you can and most importantly get the referral to the oncologist ASAP. Your dr. doesn't need another week for you to heal. Making the appointment right away is important Brcause they may not be able to fit you in immediately-and even if you are to have rads and chemo there's a lot of prep work to be done blood work, cts, mask making,etc... Plus two drs are usually nvolved in that - medical onclogist for chemo radiation oncologist for rads... And they'll bith eant to see you prior to designing a plan. It won't happen tomorrow. So the sooner the better... Good luck re the brown patches - possibly deadened skin?
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: Mar 2012 Posts: 17 Member | | OP Member
Joined: Mar 2012 Posts: 17 | Took everyones advise found an oncologist that comes highly recommended have an appointment tomorrow before I see my surgeon on the same day then I will get his referral also and see what he says. Will let everyone know thanks
Diagnosed squamous cell carcinoma surgery 2/24/12,primary tumor pT1 regional lymph node pN1 total number of nodes removed 13 with 1 positive age 53 occasional cigar smoker quit social drinker workout nut.
| | | | | 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 | I had 1 lymph node on the left side, then 4 years later 2 lymph nodes involved on the right side. Treatment for both cancer occurances was aggressive - and it needs to be. If they say things like "we'll wait and see......" or some such nonsense - what are they waiting for?? - waiting for it to be out of control??
When I had radiation the 1st time I was soooooo worried that I would never be able to have radiation again - that I would have burned that bridge. Not true anymore. Research has made many changes in protocol - and re-radiation is one of the improvements (under certain circumstances).
Find a Dr. who treats this aggressively - and you as the patient need to tell them you want them to "hit you with their best shot".
Good luck with the new Dr.
Donna
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: 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 | Agreed totally! Pandora well said...
Good luck today DS.
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 2011 Posts: 805 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Oct 2011 Posts: 805 | I agree as well. They told Kevin they hit him hard. When we realized his 60 IMRT were each 125gy we realized they weren't kidding.The MO also said he was hitting him hard with the chemo too, but I've seen some who have had the same regime. Hopefully it all worked! PET next Monday!
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
| | | | | 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 | Glad to hear you have a second opinion scheduled. Its never a bad idea to hear what someone else has to say. Good luck!
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: Dec 2010 Posts: 99 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Dec 2010 Posts: 99 | I totally agree with Pandora! We both believe if we would have pushed our wishes harder the first two bouts with his Dr.s he would never have had to be faced with what we are dealing with today. However we thought they knew best. Emmett has been asked to "speak" at a dental meeting in April to stress how important it is for them to watch, act ASP and follow up with their patients even if the biopsy comes back "just irritated tissue" as Emmett's cancer started with.
CG 2 Emmett,7/09 DX SCC rt tongue. T2N1M0, 1 node, marg neg.4/10 PET/CT clear, 9/10 C back. 10/10 Rad hemi, 2 tmrs mod diff. resec flr of mth. Flap 4 nodes/w/ext cap. 11/10 Peg, CX3 HD, 30 rad. 1/31 & 3/21 6/11/11 - PET/CT "activity" 9/11-all Clear. 12/11 peg out. 2/15 still all clear! 9/14 Prostate cancer treated with pencil beam proton therapy, best radiation experience. Keep it in mind as a treatment option for all tumors that can be seen including head and neck.
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