| Joined: Jan 2014 Posts: 8 Member | OP Member Joined: Jan 2014 Posts: 8 | I was diagnosed with stage1 SCC in Jan 2013. Had partial tongue glossectomy rebuilt with flap from wrist. Lymph nodes removed from right side of neck..followed by chemo/radiation. Cancer spread to left side of neck in October. Another surgery to remove lymph nodes from left side including a pec flap rotation to the neck, then brachytherapy. Most difficult I experience is eating with so little saliva. Neck feels like I have a brace on it. I have so many exercises & techniques to reduce lymphedema & get my left arm back in shape. Tired and feel like I'm fighting a losing battle although this last time they said cancer was confined to one lymph node. Would welcome any tips regarding eating & dealing with tongue soreness & sensitivity especially in the flap.
58 yr old male, SCC left side of tongue 2/13, partial glossectomy, flap, 30 IMRT, 6 Chemo. Recurrence 10/13, lymph node removal, Brachy therapy 100, pec flap.
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | I'm sorry to have to welcome you (or anyone else) here, ammonsmg1, but you have come to the right place and are very welcome!
I can't be of any help with your questions, but I wanted you to know that you're not alone and someone who is in a position to help will be along shortly to provide that help.
Good Luck in your journey down this path!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Hi, I feel sorry to hear you are going through these trouble. One thing I like to mention here is, think positive and stay happy. Psychological factor with set of positive mindset and rock steady approach, that's what all are looking to get encouraged. I read many a posts and concluded that what you are experiencing is a part of common recovery cycle. I'll be greatly appreciate if you can add a little signature to your profile. This allows readers to know little more about you. You can see signature examples here on thousands of post. Just make one that fits your profile (Age, Stage, Site of cancer,,etc). Whatever you feel comfortable. Tips for eating & tongue soreness, I would say expert opinions (doctor for soreness and swallow therapist) will be better choices. Also look for dedicated forum here, there are thousands of post here, all you need is to narrow down search using search bar here. Please feel free to get back to this astonishing place for more info and answers. There are more experienced leaders here, to name a few, ChristineB, Davidcpa, Paul etc. I am sure they will get back to you with a truly better answer than I've offered you here today.
Good Luck n take care.... Special thanks to OCF and all respected members here for their support
Ankur, 37, T1N2M0 12/13: Biopsy and results 01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction Right neck dissection. 3/42 nodes positive and removed Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14) 03/14: 30 IMRT Appointments Started 3/17 (No CT) 04/14: Radiation treatments completed 07/14: PET - All Clear | | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF. Sorry to meet you here but there is lots of information to help you. Quite a few have dealt with recurrence - I'm sure they will offer more specifics. Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Ammon: I welcome you also to your new family, one that is large, with several who share pretty much your exact diagnosis. It may take a little while for them to find your post, but be patient, they will read and make comments you will find useful.
While waiting on them to provide the technical information you seek, the rest of us will give you general guidance that will help make the rest of the journey a little more tolerable.
I have not had a recurrence, but I know of many who have. Bart, who responded above has had more than one, yet he maintains a wonderfully positive attitude and shares that with everyone on the forum. He helped me immensely to develop the right frame of mind regarding cancer and treatment early on after I joined the family. Get to know him by reading what he writes. Developing that right mind frame is maybe one of the most important things you can do to help yourself through this and any future battles.
Sadly, not everyone learns how to do that, and their psychology pays a very heavy price because of it. I know of at least one who couldn't get past worrying about everything, nor how to shake it off and move forward in a positive manner. That person, a dear friend has pretty well left the forum when they need the support the most.
So, as was said above keep yourself busy with postive things that you like to do. Don't give the worry bug a chance to enter the picture. Keep writing what you are going through and asking questions. We will help get you through this.
Tony
Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)
09/13 SCC, HPV 16, tonsillectomy, T2N0. 11/13 start rads, no chemo 12/13 taste gone, dry mouth, 02/14 hair slowly returning 05/14 taste the same, dry sinuses, irrigation helps. 01/15 food taste about 60% returned, dry sinuses are worse in winter. 12/20 no more sinus problems, taste pretty good
| | | | 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 | Am, welcome to OCF. Here is a List of Easy to Eat Foods which should help you to relearn to eat. Contact a speech pathologist. They can work wonders with not only your speech but with eating as well. Best wishes! 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 | HI- this cancer can be nasty - I had the same type of surgery etc (same location too) and same treatment. My difference was that I had a small 3mm node highlight on the opposite side on my pre radiation CT - after asking about it and pushing them they decided to radiate my entire neck area (all nodes) to be on the safe side even though they were not concerned about my glowing node. (I was - mind you it was my neck not theirs)
drs are often reactive not proactive.
Anyway - with regards to the tightness etc... that should change on the non radiated side eventually - stretching should help (since non radiated muscles have been cut there will be scar tissue but less fibrosis (which happens added rads) long term physio should get you back in the 90% normal range) but I also found lymphatic massage (only after you've had a clean scan) helped with swelling, and acupuncture to help return blood flow to the area will soften it up.
try to keep your spirits up... you can get through this. hugs
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
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