| Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Hi Everyone,
A month and a half after diagnosis and four opinions, I am entering to a treatment phase. Surgery is planned for early next week. I will keep readers posted after that.
Thanks 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: Jun 2007 Posts: 10,507 Likes: 6 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: 6 | Best wishes with everything, Anjur!!! Please give us an update when you are able to. 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 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Sure thing, I will.
Happy Healthy & Successful New Year to all dear readers....Hugs... 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: Oct 2013 Posts: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Hi Ankur:
Reading your signature, the last phrase about going with the flow, that will serve you wisely all through this ordeal. A dear friend, Bart, here on the forum taught me essentially the same thing early on, even before treatment began for me.
It helped me immensely, as it will help you
Best of luck with your surgery. We will be here waiting for an update. If you need to talk before then, we're here for that too.
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: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | First of all. Wish you and all readers a Happy, Healthy and Successful Year.
Thank you so much for adding confidence and backing me up on my plans. Really appreciate your motivating approach. I definitely will get back to all readers with update.
Stay warm in this winter.... 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: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Good luck with everything!
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Jul 2009 Posts: 1,406 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2009 Posts: 1,406 | Ankur, I'll add all my best vibes to everyone else's. You're got the right attitude and I'm sure you'll do well! We're all pulling for you.
David 2 SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | Joined: Nov 2013 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 37 | Ankur,
Best of luck to you! You will go through this with a breeze! I would definitely suggest them doing a neck dissection since they will be working in that area anyway. I am 8days out of surgery and have been home the last couple of days. I will mention that I haven't had any pain medication in the last three days and really isn't any pain involved. When you come to just focus on relaxing since your tongue will be swollen. The trach and me didn't get along very well, but I won!!! You will have your taste buds so start thinking of things that you like to slurp down for the first few days. I'm not much of a sweet tooth person so I went for the yogurts blended with fresh fruits. Black beans, cilantro,tomotes,lime juice all blended also does the trick. Look for calories though. I weighed myself today and have lost ten pounds! I'll give you my phrase to use..."YOU GOT THIS"!!!
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Fish,
Thank a bunch for encouraging response. Now question I have is; 1. How much tongue you had to lose during process (generic answer if not an exact, meaning 1/3, 1/4, 1/2). I believe dictionary meaning of Hemiglossectomy is excision of one side of the tongue. I read your answer 4-5 times, and here are two question attached to a previous one, 2. Did your doctor offered / suggested reconstruction of removed tongue for better functionality results? 3. If such an option was presented / offered to you, did you opted for the reconstruction?
Reason for this is s, my ENT today explained to me today that he is not sure if large part of tongue needs to be removed (if large Hemiglossectomy required once we start operating). He said, looking at out side vs inside are different scenarios. Tumor may require me to go with larger removal to achieve better clear margin. So he wanted my consent to reconstruct lost part of tongue side by side on a same surgery with help of plastic surgeon. (6 hours total in a surgical room with re construction)
He said believe me, it would be better over not to do so. My concern is, I don't want artificial implants and create a room/opportunity for future complications by reconstruction (this is my perception). I am OK with lose of part of tongue but with less complications. (Similar to you if you have not done reconstruction). I saw doctors at CCC in midwest and in east coast. One of the doctor in East coast said, most of ENTs in east coast will offer you the reconstruction (in the first place during the first surgery itself, its a standard practice custom/protocol in east coast) which is unlikely in mid-west and west coast. She was right, none of the two CCC offer / suggested / talked about reconstruction at all in midwest (IL/OH).
In your case, if that was nearly 1/3 loss without reconstruction, and you believe speech and swallow function will be affected by 10-20%, If you accepted this change than I like not to go with the reconstruction. Did I mentioned hidden treasure? You still have your taste buds.
Any suggestions are welcome besides an experience from Fish. I responded to him since closest cast to my upcoming surgery and is most recent case to date I've seen here.
Thanks every one.
Last edited by neversmoke; 01-07-2014 02:10 PM.
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: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | FYI,
Doctor decided and confirmed to perform neck dissection at the same time. Also suggested reconstruction at the same time. First phase of treatment includes;
1. Partial glossectomy 2. Reconstruction 3. Neck dissection
Doctor said, you will not need chemo/rad after that (95% not). (At least what he said and conveniences me.). I wouldn't surprise RO to come up with his set of recommendations after ENT surgery explaining reasons to go for Rads. Will keep you posted.
Last edited by neversmoke; 01-07-2014 07:05 PM.
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: Sep 2013 Posts: 105 "OCF Canuck" Senior Member (100+ posts) | "OCF Canuck" Senior Member (100+ posts) Joined: Sep 2013 Posts: 105 | Hi Ankur, my thoughts are with you, Hope you have a family member stay with you during the initial stage of recovery. Try to keep busy, bring a book, cross work or scratch and wins while you are waiting, Sophie
husband 61@diagnosis painter 6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis 17/9/13 Dx(moderately aggressive) 24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube 2/01/14 (30 tx)rads 60gy N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes) Clear margin, close 2mm inner cheek 15/05/14 cellulitis 3/12/14 Chest CT Clear 27/02/15 cellulitis 8/6/15 cellulitis 10/6/15 Osteomyelitis
| | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Sophie,
Thanks for all your well wishes. Matter of fact, I arranged to have multiple activities like you explained. I am a tech guy and feel better online over laptop and iPad. I definitely engage myself some how. Moreover, my employer decided to allow me to work from home as much as I feel better with no force. So staying in touch with the office colleagues will be another flavor and a different psychological form factor during recovery period. Maintaining clear head out of and away from sick and painful thoughts is an important key. Positive stimuli reacts better in recovery process. I hope this will work. Thanks and good luck to all lovable members here....
Last edited by neversmoke; 01-07-2014 06:22 PM.
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: Nov 2013 Posts: 37 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Nov 2013 Posts: 37 | Neversmoke, The answers to your questions are 1. close to half of my tongue was removed...I had a tumor on the lateral left and they made the cut in the shape of a banana. 2. I was offered reconstructive surgery and advised to take it because of how much tongue they were taking. 3. The functionality with the remaining portion is amazing! Even with the right side being the only active portion of tongue left I have started to maneuver food from the left side to the right. My taste buds are in tact and I still have a great palet. The only drawback was they used part of my chin...which I now have hairy tongue...Its not really an issue and is hard for others to see since its on the lateral side.
Fish
SCC front left lateral tongue T2N0M0 After neck dissection. partial glossectomy 12/26/13. Perinueral Invasion. IMRT 60gy 30 treatments beginning 2/5/14 through 3/19/14.
| | | | Joined: Dec 2013 Posts: 78 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Dec 2013 Posts: 78 | Fish,
thank you so much for taking time to answer my questions. I will keep you posted by Friday. I am finalizing treatment blueprint. Draft is on table, Finalizing this week and next week, I'll be on a surgical table. Beauty of this forum is, it makes you aware and helps to prepare for every possible scenario with least anxiety and frustration. Ability to make well informed decision leaves you happy. This is all about this forum does.
Thanks everyone. 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 | | |
Forums23 Topics18,168 Posts196,924 Members13,103 | Most Online458 Jan 16th, 2020 | | | |