| | Joined: Mar 2015 Posts: 2 Member | OP  Member
Joined: Mar 2015 Posts: 2 | Hey everyone. I'm Jordan. Healthy, in shape, athletic 29 year old male from Birmingham, AL. No history of smoking, tobacco, dip, with only moderate alcohol consumption. Was diagnosed 1/20/15 with SCC of the oral tongue, left side. Had a partial glossectomy, lymph node dissection, and tongue flap reconstruction from forearm at MD Anderson on 2/23/15. I'm actually still here, got my feeding tube out today, and have a followup with the plastic surgeon and head and neck doctor tomorrow. Hopefully they will dismiss me for now with a followup in 2 months I believe. My speech is understandable, but still what they call "soggy", have some swelling and tightness in my neck and under my chin from the lymph node dissection, and my forearm still looks pretty gnarly from the skin graft. All in all, these doctors out here did a fantastic job. Still hard to believe (as well as the doctors) that with my age and background I had and oral tongue SCC. From what it sounds like though, it was caught early and I don't think I'm going to need radiation from what I'm hearing. Anyways, just thought I would introduce myself To everyone here! 
29 year old healthy athletic male
No history of tobacco/dip/chew
1/22/15 T1-2N0M0 Oral Tongue SCC
2/23/15 Partial Glossectomy with flap reconstruction and lymph node dissection at MD Anderson. All nodes clear.
3/2/15 tracheal tube removed
3/9/15 feeding tube removed
| | | | | 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 | Welcome to OCF, Jordan! Im very sorry you went thru this at such a young age. We have several members who are in their 20s and are OC survivors/patients. We also have quite a few who have been diagnosed with OC and have no risk factors, they are part of the "unknown cause" group. My guess from what Ive seen here on the forum, is that a good 10% of all OC patients are in that category. In time your speech will improve. If you are able, get a speech pathologist involved. They can really work wonders with the clarity of your speech. Best wishes with your continued recovery. PS... Great signature Watch next to the My Stuff tab for a tiny flashing envelope. Im going to send you the same info I send all new members. Just skip over the signature part.
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: Sep 2011 Posts: 61 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Sep 2011 Posts: 61 | Hi Jordan. I was 31 at diagnosis with no smoking or tobacco and light drinking. Our stories are similar except I did have node involvement. Sounds like you are at the right place and doing well. Your speech should get better. I am almost 4 years out and have no speech or eating problems (except intolerance to really spicy foods bc of the radiation I had). Good luck to you! This board is a great source of information.
Do not go gentle into that good night. Rage, rage against the dying of the light.
31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Welcome, Jordan. It sounds like you made it through so far with great success! Get back to all that "athletic" stuff as soon as you can. Be sure and have someone show you all the neck stretches you should be doing every day from now on. It will give you great comfort.
Best wishes for smooth sailing.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Cheri, Jordan, at your ages, you might want to find out if there is a Family Practitioner that is part of the ACE (After Cancer Experience) program. They are specialists in monitoring younger people after cancer. It is a great program and as an older fart, the information I was given proved invaluable.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Mar 2015 Posts: 2 Member | | OP Member
Joined: Mar 2015 Posts: 2 | Good stuff. Thabks for the replies! Does anyone know when/if all this swelling and tightness will go away under my chin and on the left side of my neck? I'm worried this is lymphadema and would rather not live the rest of my life having a lymphadema caused double chin and a super stiff neck. I'm hoping it's just some swelling caused by surgery or whatnot.
29 year old healthy athletic male
No history of tobacco/dip/chew
1/22/15 T1-2N0M0 Oral Tongue SCC
2/23/15 Partial Glossectomy with flap reconstruction and lymph node dissection at MD Anderson. All nodes clear.
3/2/15 tracheal tube removed
3/9/15 feeding tube removed
| | | | | Joined: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2013 Posts: 1,293 Likes: 1 | Welcome to OCF! You are doing very well for such a short time since treatment. As you are young and fit, you will surely bounce back faster than many. It will still take time. Think in terms of 6-12 months before things stabilize a bit.
It will take some time for the nerves, muscles and tissues to settle into their new state. Most pains, aches, swelling, and tightness will subside over time but don't be surprised if you have some long term linger side effects.
I'd think it would be minor but with some diligent stretching and exercises you can probably manage quite well.
Good luck, 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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hi Jordan - welcome - my cancer was similar but I had one node involved - so I did rads and chemo. Be patient with your recover... And best of luck!
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: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | [quote=cxslayer]Good stuff. Thabks for the replies! Does anyone know when/if all this swelling and tightness will go away under my chin and on the left side of my neck? I'm worried this is lymphadema and would rather not live the rest of my life having a lymphadema caused double chin and a super stiff neck. I'm hoping it's just some swelling caused by surgery or whatnot. [/quote]
The double chin or turkey gullet as some call it is usually lifelong. Super stiff neck will be that way for a while if not forever. The stretching will make it feel much better.
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | When you are cancer free for a bit (hopefully your nodes will come back clear and you won't have to have rads and chemo) and you're healed - maybe look into physio for your neck, and eventually lymphatic massage.
I also had a bit of acupuncture (too early for you to even consider this - BTW) it helped get the fluids and blood moving in the area. I am still numb (somewhat) and a bit tight 4 years later. I doubt the numbness will ever completely go away but it does improve and the tightness will minimize over time.
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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