#93745 04-15-2009 05:16 PM | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | The biopsy today came back positive. I am in shock mostly. I am also in pain. I see the oncologist on Friday to find out what my options are but the ENT and the reconstructive surgeon say it is inoperable.
I'm going to compile a list of possibilities for second opinions. The oncologist says that there are some clinical trials also.
It is a very quiet night here for me and my puppers.
Patty
Last edited by Good1; 04-15-2009 05:17 PM. Reason: typo
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | | "OCF Down Under" Platinum Member (300+ posts)
Joined: Mar 2008 Posts: 404 Likes: 2 |
Oh Patty
I have been thinking of you often and I just don't know what else to say except that I am so sorry.
Karen (((((Hugs))))
46 yrs:
Apr 07-SCC 80% entire tongue removed,T4N1M0
Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs
30 x rad,6 x Cisplatin,
30 x HBO
Apr'08- flap Recon + ORN Mandibulectomy
(hip bone to reconstruct jaw)
Oct'08 1 Plate out-jaw
Mar'09 Debulk flap
Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | | 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 | Patty
I am so sorry that this has happend. Please do your best to remember that you have us to lean on. Feel free to vent if you need to. We are here for you.
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: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Well my heart sunk when I read this. Boy this sucks. But, I am glad to hear that you have begun to think about your action plan but
I am sure the shock of the results will take a day or two to sink in. Know we are here for you and will help you in any way we can. We will walk this journey with you - regardless of the path.
Hugs
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Thank you. Once I come out of shock I will feel the need for more information and I have the appointment Friday AM to get that. Nothing today was very positive - it is a very aggressive cancer, it originated in the left floor of my mouth, them moved to my tongue and now is in the right side of my neck. I'm certain that there is no more radiation in my future. I have been down that road twice now.
I sure did need the hugs tonight Thank you
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Mar 2009 Posts: 54 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Mar 2009 Posts: 54 | I would like to add a big (((Hug))) from me.
Sweetpea
********
2/09 MEC Rt Submandibular Gland,Tumor Exc,age 68; 4/09 Rt Neck Resect, Excise Rt Lingual Nerve, 10 nodes; 1 month later- Lge Abscess Drained 5/09; 4 more cancers, final path report; 6/09 IMRTx33
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Patty i am so sorry
this path is sure getting well trodden and i am sad to see you getting the news we all dread.
my thoughts and prayers are with you and i hope you get some options soon.
love and hugs liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
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Joined: Mar 2008 Posts: 3,082 | Patty
This SUCKS and is totally UNFAIR and WRONG. I know all too well how bad it feels to be "two timed" by Cancer, but Three is too much. Words can't help here, but you are not alone. I go in to my Radiologist in an hour to discuss getting "Cyber-Knife" radiation in an effort not to join you in the round three club.
You may want to ask about that as I am being told that despite getting the "maximum" 72 GY 18 months ago, the Cyber Knife is so targeted and precise that they can do it again. It is usually used on Prostate cancers and when more radiation after IMRT has failed.
Good luck and best wishes
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
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Joined: Sep 2006 Posts: 8,311 | Patty,
Why did they say it's inoperable?
I'm so sorry you are having to deal with this.
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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | I'm still whirling from yesterday David, but my sister was there with me and the ent is available to answer questions for me today once I get myself together. She said that it had something to do with the arteries in my neck and the location of the tumor, plus the quality of life afterward. I know that can decide the quality of life part.
I will be getting more info today and I'm sure that a PET will be ordered so we can find out what exactly we have here. What sucks about this is having to gather info and make really important decisions when you are so sick you can't decide what shirt to wear. LOL
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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