| 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 | Rebecca, That's very young for SCC especially if it's HPV positive. Do ask to have her cancer slides tested for HPV. A PAP will only tell if she has HPV cervically, not orally. With a BOT Primary she has a 70+ % chance that HPV is the culprit which would be a good thing. Are they planning to do a PET to determine if any nodes light up? What do they say is the next step? Where is she being seen? Are you near a comprehensive cancer center?
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: Oct 2013 Posts: 24 Member | OP Member Joined: Oct 2013 Posts: 24 | She will be having surgery at Vanderbilt within the next 2 weeks. Doctor's plan is to cut from below her ear to her chin, make a zig zag incision up to her lip, remove a tooth and cut through her jaw bone for better access to the area. He estimates that he'll need to remove about half of her tongue. She'll have the transplant from her forearm main artery and veins and skin graft from her thigh. Trache and feeding tube. I've searched everywhere to see pictures of people who have had a similar surgery to see how they healed and what the scars look like, but with no luck.
Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13 Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only) Forearm flap reconstruction Trache and NG feeding tube after surgery (both removed now) Tumor 6.7 cm All lymph nodes tested came back negative for cancer Radiation- 30 treatments (ending 2/18/14) 3/20/14 Recurrence- tumors in both lungs; likely metastasis
| | | | Joined: Oct 2013 Posts: 24 Member | OP Member Joined: Oct 2013 Posts: 24 | Thanks for the advice. Do you know where we might find before/after pictures?
Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13 Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only) Forearm flap reconstruction Trache and NG feeding tube after surgery (both removed now) Tumor 6.7 cm All lymph nodes tested came back negative for cancer Radiation- 30 treatments (ending 2/18/14) 3/20/14 Recurrence- tumors in both lungs; likely metastasis
| | | | 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 | Please check your messages. I have sent you info to help you with the forum. A signature is very important part of helping us to help you. This is fully explained in the private message (PM) Ive sent. Towards the top of the page, next to the My Stuff tab in the middle you should see a small flashing envelope, click on that to get your messages.
Most people who have had mandibulectomies do not pose for before and after photos so Im not surprised you havent be successful with finding photos. Its going to be a very long road for your sister. She needs to prepare herself for the possibility of looking different for at least the next year. Anything that is done can be changed after a minimum of one year of healing. Looks fade with age and they really arent as important as everyone thinks. It took me waking up disfigured to understand how unimportant looks are in the whole scheme of things. I would much rather be unattractive and be alive than be pretty. I have always been a very strong independent person so I adjusted easier than most people to my situation. It might be a good idea to have your sister seek out a therapist to begin working with to handle everything.
Right now she should focus on her nutrition and hydration intake. Every single day she needs to take in a minimum of 2500 calories and 48 oz of water for at least thru the next year, maybe 2. This will help her body to recover and get thru everything she is facing. At this point she should eat all her favorite foods and drinks, without worrying about gaining a few pounds. That probably would be a good idea to get a little extra weight on as she will most likely lose that plus more during all the upcoming treatments.
Best wishes to your sister 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 | Hi there. I think the outcome of the surgery will depend on the skill of the surgeon. My dr. Wanted to do the same to me. My tumor was under my tongue on the left side, my dr wanted permission to split my jaw - which is what you described. I told him he could have it but not to go into the operating room with that as a plan of action. That I do film work for a living, and if he were to split my jaw that would damage my ability to ply my trade. If he absolutely had no choice to get all the cancer then that was fine, but to do his best not to if he could avoid it. (He said he lost 10 lbs in the OR that day - trying not to split my jaw) The smallest margin was 6mm which is quite good I'm told, he got it all and did not have to split my jaw, he even did hidden stitches in my neck. God bless him. That said. my first room mate in the head and neck ward had had the surgery you described and after 20 days in the hospital (they were being stuffy about sending her home without her eating a lot so they kept her a very long time) she looked okay, I gather that when then area was completely healed the scarring would have just been thin and white. I would ask why a zig zag and I'm assuming there will be a plastic surgeon present to rebuild the graft area - hopefully he will be the one to close her up. Is she being seen at a comprehensive cancer center? Usually they use a team approach that includes a plastics guy. Since she's so young I would ask that they try to have minimal scarring, in the long run her life is far more important but a young woman does tend to value her looks. Dave the Aussie (Dave 1987 or something like that) was 18 at time of dx for the same cancer and he had the same operation and his scarring isn't too bad - he's on Facebook you can friend him. this is in no way like a mandiblectomy which Christine mentioned. Best of luck
Last edited by Cheryld; 10-29-2013 06:55 PM.
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: Oct 2013 Posts: 24 Member | OP Member Joined: Oct 2013 Posts: 24 | Thanks for the feedback. He explained the zig zag incision would be used because the eye follows a straight line, so this will make for a less noticeable scar.
Sister, 18yr old, diagnosed with oral tongue cancer 10/08/13 Total Glossectomy and neck dissection 11/18/13 (saved the back left portion of her tongue base only) Forearm flap reconstruction Trache and NG feeding tube after surgery (both removed now) Tumor 6.7 cm All lymph nodes tested came back negative for cancer Radiation- 30 treatments (ending 2/18/14) 3/20/14 Recurrence- tumors in both lungs; likely metastasis
| | | | 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 | NOT TRUE!!!! a thin well formed straight line is far less noticeable. just saying.
Anyone else have input on this?
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: Mar 2013 Posts: 421 Likes: 1 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Mar 2013 Posts: 421 Likes: 1 | I had a selective neck dissection. My surgeon used a crease in my neck for the incision line. You can't see the incision at all. I'd have to point it out and even then it's hard to see.
"T"
57 Cardiac bypass 11/07 Cardiac stents 10/2012 Dx'd 11/30/2012 Tx N2b MO Stage IV HPV+ Palatine Tonsillectomy/Biopsies 12-21-12 Selective Neck Dissection/Lingual Tonsillectomy/biopsies TORS 2/7/13 Emergency Surgery/Bleeding 2/18/13 3/13/2013 30rads/6chemo Finished Tx 4/24/13 NED Since
| | | | Joined: Oct 2013 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Oct 2013 Posts: 33 | I would agree following the natural crease or wrinkle in the neck would hide the scar best. I just had mine and I think it looks pretty good and hopefully it will get even better with time.
Curt
Age 43, nonsmoking, social drinker Left tonsil cancer SCC HPV+16 Stage IV tonsillectomy, robotic radical tonsillectomy and neck dissection 4 of the nodes removed had cancer. 2 had extra capsular spread. 3x cisplatin 33x rad 11/18/13 Completed treatment 01/08/14
| | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | [quote=CWB]I would agree following the natural crease or wrinkle in the neck would hide the scar best. I just had mine and I think it looks pretty good and hopefully it will get even better with time. [/quote]
I had the same kind of surgery (hidden in a fold in the neck, which as others have stated, is invisible unless pointed out) to remove a tangerine-sized tumor from under my jaw.
The surgeon originally thought that it was in the parotid gland, but it turned out to be a metastatic tumor in a lymph node. It took nearly two months to locate the primary in the base of my tongue, and in the search, three more metastatic tumors were found in lymph nodes in my throat (on the other side.)
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!
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