#41386 06-17-2007 05:02 AM | Joined: May 2007 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2007 Posts: 61 | Well, just as my gut told me, the cancer is still in my tongue. The rad and chemo got rid of some of the tumor but not all of it. Damn. So, next Monday, the 25th, I will be getting the left half of my tongue removed.  What a disappointment. I just keep reminding myself of all the positive survivor stories I read about here. I will eat and talk again. I just have to. My surgeon is going to take out some nodes, even tho they all look clear. He said it won't affect my recovery, anyway. He said he's gonna go thru the middle of my botton lip/jaw and around to my ear. I cannot even picture this, it makes me want to pass out. I am very squeamish when it comes to my mouth or nose. If anyone has any suggestions for me or positive stories to keep me going, i'd appreciate it. I just want this all behind me. I've been in pain & unable to eat since last December so I'm reafy to do this surgery and hopefully start to put it behind me. I always knew in my GUT that it wasn't gone. I was just hoping my gut was wrong.
SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
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#41387 06-17-2007 05:12 AM | 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 | All I can say is hang tuff. Don't let your stress create more problems for your body. Focus on this surgery and just get it done.
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.
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#41388 06-17-2007 05:29 AM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | I'm so sorry to hear that news. I hope you are using whatever support is available for you to get through this next surgery and the recovery. Every time I read one of these stories where someone finds new cancer (or cancer still there) when they haven't even recovered from the rad and chemo treatments they already had I just want to cry it seems so unfair. As David said, just take one thing at a time, the next thing being preparing for the surgery and try not to be too stressed.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#41389 06-17-2007 07:11 AM | 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 | Hi Jordan tough diagnosis, but just read all the stories here and you will know you are not alone.Touch your screen and feel the support you have from everyone on this site .We will be with you every step of the way.
((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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#41390 06-17-2007 09:25 AM | Joined: May 2007 Posts: 61 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2007 Posts: 61 | Thanks you guys-what a great support this is. When I found out it was for sure cancer, I felt like I wanted to come home and email you all. It's just nice talking to people who have been thru it. I feel really strongly that I'm going to be OK. I know it's going to be so hard and a long road but I'm ready for it. It's not like anything has been easy lately, so I'll just add this to it and then move forward.
SCC-tongueT3N0M0- IMRT 35times-1/07-3/07; along with one cycle of Cisplat & one cycle of Carboplat; weekly erbitux.finished all tx.3/07-supposedly gone. Recurrence 6/07. Age 31-non-smoker/social drinker. Devastated it's back.
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#41391 06-17-2007 11:33 AM | Joined: Sep 2006 Posts: 22 Member | Member Joined: Sep 2006 Posts: 22 | Jordan,
We have never spoken but your story has touched me. You can do this. I will be thinking of you over the next couple of weeks and sending out positive vibes. Take care and best of luck.
Gary
SCC left Buccal Mucosa (cheek). Surgery with Modified Radical Neck (23 lymph nodes - all clear). IMRT x 30. Finished tx 11-21-06 "Don't give up, don't ever give up!"
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#41392 06-17-2007 11:53 AM | Joined: Jun 2007 Posts: 718 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 718 | Jordon,
Your gut instincts seem really strong. So, even though your gut instinct told you the cancer wasn't gone, I was really happy to read that you also have the same strong feeling that your are going to be OK.
What a great attitude you have. You are an amazing person. Please keep posting, our prayers will be with you.
Margaret Margaret ---------- C/G: Husband, 48 (at time of dx) Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3) Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
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#41393 06-17-2007 12:44 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Jordan,
Margaret is absolutely right - you have a great attitude. I am convinced that a positive outlook makes treatment easier and recovery faster. Right after diagnosis I came across the 50%-5 year statistic (which I now know to be bunk) and decided right then which 50% I would be in and never looked back.
Always know that there are LOTS of us pulling for you! | | |
#41394 06-17-2007 03:40 PM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Hi Jordan, Jack had the neck dissection so I can offer you some suggestions on that. First, remember that what you look like right after sugery is NOT what you will look like when all the swelling goes down and the scar fades. They will probably use staples, which looks a little weird when you wake up. There will also be drains in place. Jack is now 16 months post the surgery and you can barely notice the scar now. You'd have to be right up on his neck and seriously if someone is that rude...go to Physical therapy quickly after surgery for lympatic drainage and exercises to prevent wooden neck. The PT also taught Jack external massage techniques to move the fluid. He said to tell you this was really critical and helped him. There are people here that had part of their tongue removed and are survivors. For that you will need speech therapy. You hang in there and stay positive. Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#41395 06-17-2007 04:21 PM | Joined: Jan 2007 Posts: 735 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2007 Posts: 735 | Jordan
I had those same surgeries ..I lost 25 % of my tongue ..left side and left neck dissection ..4months ago. and the scar is barely visible matter of fact other Drs comment on how "NICE" ( LOL) it is . they tell me it will still fade more !!If you would like to talk you could always email or pm me with your number and we can talk !! i dont pay long distance so no biggie !! I know we are both going through alot right now and I know how nice it is to talk to some one who understands..I also understand the need to come home and get on here and tell every one !
Shar
Sharlee 35 year old Female Non smoker, very occasional alcohol ..Scc T1N0M0,partial glossectomy and left neck disection ,2/9/07 No rad deemed ness. 4/16 tonsillectomy ..Trimengenial Neuralga due to surgery
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