| | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jul 2011 Posts: 945 | I'm very sorry to hear this, Kelly - but we still don't know that it's not an ulcer. Prayers and best wishes for you.
Maria
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker
First symptoms 7/2010, DX 12/2010
TX 40 IRMT (1.8 gy) + 10 Cetuximab
PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | | Joined: Oct 2011 Posts: 225 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Oct 2011 Posts: 225 | Kelly, I'm keeping everything crossed for you, my dear, and hoping it all turns out OK. As Maria says, you still don't know that it's NOT an ulcer. Linda
Brother 49yo DX 22/6/11 Tonsil SCC HPV+ Stage IV T4N1(?)M0. Carbo/docetaxel (Taxotere)19/7, 11/8 (with E-tux), 1/9; E-tux 11/8, 25/8, 15/9, 30/9, 14/10, 28/10; IMRT X 35 (70gy tumour;63gy nodes;56gy gen area) 19/9-4/11/11. Clear PET scan 1/2/12. 1 and 2 year post treatment checks good.
| | | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | | "OCF Down Under" "Above & Beyond" Member (500+ posts)
Joined: May 2010 Posts: 638 | Hey kelly
Settle petal!!! Your ENTs comments don't count anymore. He said those things when he thought he was looking at a classic re-presentation of your SCC and the biopsy suggested it isn't.
Is it right on the spot where your radiation was? Just as likely to be radiation damage if it is and which is no picnic but not spreading as you are imagining. As your ENT suggests, recurrences can come back faster and more aggressive than before but from dime size to quarter size in a matter of days seems a bit much for a SCC.
Your voice will not disappear unless they take your voice box which is a long way further south and drinking fluids may also be unaffected. Issues likely to completely kybosh drinking are also located south of your problem, although I appreciate an incomplete soft palate might present some reconstruction or retraining challenges. It is really dependent on how much they have to cut out but try not to jump ahead (as I have just done) in joining the dots until you know what the overall picture is supposed to look like.
Take your Zanex and try really hard to stop over thinking this (says I, queen of the over thinkers).
Karen
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Kelly
Yeah, very familiar with those "bad nights". It is dispiriting to hear such negative comments from your ENT, but it's very important to put them into the context of the speaker. I'd bet serious money that this ENT would not have lasted 5 minutes in the Amazon, let alone conquer even a small percentage of the odds you have routinely beaten in your life. No doubt in my mind that this ENT would just give up and die in a hospice rather than continue fighting. But you?
You are young, with a wife and family. The surgery just isn't the end of the world. Of course it's brutal, but honestly, would this be the first time you did brutal? I think not. If an old guy like me can have the entire floor of mouth/base of tongue carved out, a flap put in, jaw split, neck dissection, traech in and permanent feeding tube and then need 12 days in the hospital to recover, you can do this.
Time for you to hook up with an experienced prosthodontist. Mine made me two different palate drops to help with speech. Plus a good prosthodontist can make excellent oral prosthesis.
The question of when to say when can only be answered by each of us, and I used to really really hate everyone telling me how "tough" I was, and what a fighter I was - but you know what? It's true and it's true for you. So you got an extremely candid self assessment of your ENT's fighting spirit and spunk, don't let it spook you.
Let me gently remind you that you have traveled off the beaten path before, that's why you are a member in good standing of the Adventurer's club and your ENT is not.
Having said that, IMO this is tougher than anything else you have done but it's a struggle worth fighting.
Keep the Faith
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | What a horrible bedside manner!!!! Doctors dont know the damage they can do to a patient when they have these types of discussions. That doctor must not know you very well. Dont let their words get to you!!!! After everything you have gone thru, this is just another bump in the road to make yo well.
The biopsies I have had were just little snips of tissue too. But those tiny snips were able to determine caner or no cancer. Hope that helps to ease your mind some.
After doing radiation twice, your body isnt able to heal very quickly. Rads does a number on us and it really makes healing difficult! Im so glad you are heading to another center for help! You have been a wonderful advocate for yourself in the past and Im certain you will continue to strive for answers with this new issue.
Keep us posted. Good luck in Pittsburgh!!!!
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 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: Sep 2009 Posts: 618 | I met with my doctor here at UPMC today after having a CT. Dr. and radiologist both felt CT was very indicative of an ulcer. My Doctor was not real happy with the ENT back home telling me it looked like a textbook tumor or the fact that he questioned whether I still wanted to fight this thing and had I considered Hospice. He said �I wish these guys would just take the biopsy and shut up until the results come in�.
He let me know that it would not bother him at all if I just went home as we have a negative biopsy and a CT backing it up. But it is a nasty ulcer and he said he can clean it up a bit while at the same time taking a few more samples just to make sure we see no disease. I am already scheduled for the surgery suite on Thur. so he is leaving it up to me. Part of me just wants to go home and the other part says go ahead and do the procedure. It is a minor one and he will not be cutting enough to need any stiches and I�ll be under less than an hour.
I also keep wondering what would have happened if I took the other doctor�s advice on the hospice. Has anyone ever been evicted from a hospice for not having a fatal condition?
Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Great news, Kelly! I say to stay there and get it done. You don't have to wait long and you seem to be in very capable hands. Best wishes and keep us posted.
Xoxo,
Kerri
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Kelly211
Kerri and I seem to be singing the same chapter and the same verse these days in our posts. Like the song says:
Stay, just a little bit longer - stay stay stay...."
Great news brother
Charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | Arent you so happy that you have truly excellent doctors to make up for the ones who have bad bedside manners? Boy what a disservice that guy is to his patients. Have you considered notifying your insurance company about him?
Best wishes with the procedure on Thursday. I kinda think you will be having it done. Sounds simple enough and will take care of your problem.
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: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Kelly!!! You are amazing!!!
I am so sorry you had to endure the words of that insensitive Dr. why on earth would he/she say that to any patient no matter what thier condition. Makes me so MAD!
Good for you for never giving up.
God bless you and I wish you only very good health from her on out.
Last edited by misskate; 09-11-2012 08:52 PM.
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
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