| Joined: Aug 2011 Posts: 3 Member | OP Member Joined: Aug 2011 Posts: 3 | Thank you. I had a biopsy of the lesion on my tongue prior to the PET scan, and they are pretty sure this is SCC again...The lungs and trachea I am hoping are false positives!
Dx 2002 with SCC of left lateral oral tongue, stage T2N0M0 Partial glossectomy, radiation, Amifostine
Dx 2011 with SCC of left lateral oral tongue, possible mets to trachea and lungs PEG inserted Scheduled for glossectomy on Sept. 1, 2011
Never used tobacco in any form.
| | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Shelly,
Welcome to OCF but sorry you are here. I've also had a recurrence at the same location nearly 5 years after my first run-in with OC. I'm praying that the PET scan is a false positive. I hope your surgery goes smoothly and please post an update when you can.
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: Jun 2009 Posts: 440 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jun 2009 Posts: 440 | Welcome Shelly!
Sorry to hear about the recurrence. I'll be praying that the PET scan is a false positive and that your upcoming surgery goes well.
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0 Elizabeth, 33, mother of 3 girls (4,7, &8yrs old) 3 rds of chemo(Carbo/Taxol) Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube. 30 rds of rads with weekly cisplatin SCANS ALL CLEAR! OCF Regional Coordinator of San Antonio Walk
| | | | Joined: Aug 2011 Posts: 3 Member | OP Member Joined: Aug 2011 Posts: 3 | Well, I got some bad news at the pre-surgery Treatment Planning conference. After the latest CT scans were read and the lung biopsy came back, the picture was far bleaker than we had initially believed. I have decided not to go through with the surgery, because it would cause a dramatic reduction in quality of life and function for not many extra months, but instead to go for palliative chemotherapy. I see the medical oncologist tomorrow (Tuesday).
The article about me from the St. Pete Times had a number of factual errors because I wasn't up to being interviewed. Unfortunately, there is no truth to the statement that the tumors had shrunk; my campaign manager was misinterpreting the fact that the surgery time, initially estimated at 10 hours, was re-estimated to be about 3 hours.
Shelly
Dx 2002 with SCC of left lateral oral tongue, stage T2N0M0 Partial glossectomy, radiation, Amifostine
Dx 2011 with SCC of left lateral oral tongue, possible mets to trachea and lungs PEG inserted Scheduled for glossectomy on Sept. 1, 2011
Never used tobacco in any form.
| | | | Joined: Apr 2011 Posts: 267 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Apr 2011 Posts: 267 | Shelly, I'm so sorry to hear that. I hope that you will stick around here. The people on this board can be a wonderful source of knowledge and comfort. I will be praying for you.
Tracy - 33 at diagnosis SCC right ventral tongue Dx 4/11. T1N2M0 1st resection 5/11. Bilateral neck dissection: 2 pos nodes 2nd resection w/graft 6/11. Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11. 3 month MRI and PET/CT all clear. 6, 9, 12 and 24 month post treatment MRIs all clear. | | | | 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 |
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: 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 | Shelley, Im very sorry the tests came back with such bad news. Please think it over very carefully before making this huge decision. I know how difficult it is. I was faced with a recurrence and thought it over long and hard before I agreed to have 1/2 of my lower jaw removed. There really can be a good life after going thru something so life changing. Best wishes with everything! 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: 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 | Sorry not sure what happened with my previous post it should have been much longer!. I'm sorry to hear your test results werent good but please don't give up! There are people hee who've had difficult diagnosis and are doing well. I agree with Christine, think about ot before you make such a difficult decision. Hugs and prayers to you...
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: May 2011 Posts: 287 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: May 2011 Posts: 287 | Shelly, if you have decided not to go with surgery, I respect your decision. However, I would still advice you to go for a multi-drug (Taxane + Carboplatin/Cisplatin + 5-FU)chemotherapy instead of pallative care.
Since you did not have any prior chemotherapy, you stand a better chance to have complete recovery or partial recovery to go with further treatment.
Hoping that you will consider my advice and discuss with your medical oncologist. Father; 67 yrs; RIP: 2012/05/26
TX:SCC pT2N1M0G2;Glossectomy+SND+CCRT(59.3Gy+6xCis.)[2009] TX:Nodal Mets; 3xDCF[2011/05/05] TX: RND + PMMC Flap[2011/07/11] DX:SCC PNI+ECE TX:Re-RT 60Gy[2011/09/21] TX:Gefitinib 250mg[2011/12/18]
| | | | 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 this news totally sucked!! Only you can make the decision about how to proceed but we are all definitely here to support you whatever that decision is. How unfair life is sometimes. I will keep you in my thoughts and prayers.
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)
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