| | Joined: May 2015 Posts: 18 Member | OP  Member
Joined: May 2015 Posts: 18 | Yesterday my husband was given a Dx of Stage 3, SCCA of posterior tongue. The ENT doc said he was a T2 N2 M0. He has recommended taking about 1/2 of his tongue and grafting tissue from his thigh, as well as a L radical neck dissection. This would be followed by radiation. Our biggest question right now is should we go to a cancer care center or stay home and have surgery here. My husband is a musician. He sings and plays guitar. The head and neck surgeon/otolaryngologist told us he is experienced with this surgery. I would be a huge but possible (I think) decision to go to MD Anderson, or someplace in Chicago for at least the surgical part. Our doc indicated that he feels the cancer centers are more surgically aggressive and adhere to rigid tx protocols. He feels there is some finesse with experience . Any thoughts?
Kate, wife of husband with
May 2015, SSCA left lateral tongue, T2N2bM0 Stage 4 , Age 58
06/01/15, L hemiglossectomy, modified L radical neck, clear margins, 2 nodes positive, no extracapsular extension. Perineural invasion on lingual nerve in tongue.
Tx completed 8/28/15, IMRT and 2 high dose cisplatin.
12/15 negative PT scan
5/16 negative PT scan
2/16 fitted with partial denture
12/16 3mm area of exposed mandible identified. Started on pentoxifylline regime
3/17 completed 40 HBO dives.
| | | | | 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 | First, sorry about your husband. Second, I would get a second opinion as soon as you can. I don't know what newfangled treatment he can offer when the top level comprehensive cancer centers set the treatment protocols for others to follow. Just my opinion.
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 2011 Posts: 1,024 "OCF Kiwi Down Under" Patient Advocate (1000+ posts) | | "OCF Kiwi Down Under" Patient Advocate (1000+ posts)
Joined: Mar 2011 Posts: 1,024 | Hi Kate, I'm sorry you have to be here. Stick with us and we will help you as much as we can. I agree with Uptown. Get to a Comprehensive Cancer Center as fast as you can. Research has proven that a CCC has better outcomes for their patients. They deal with thousands of similar patients, while I would guess that your local ENT only sees a few a year. CCC's have a Tumour Board approach which involves the surgeon, chemo oncologist, radiation oncologist, Speech Language Therapist, Oncology dentist and a few others. I know where we would rather be treated.
Wishing you the best,
Tammy
Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
| | | | | 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 | I would agree with everyone here. While staying home is comfortable you need a top surgeon to do the surgery and it should be at a top cancer facility. Even if its a few hours away.
Treatment for this cancer is blessedly short in a lot of ways compared to other treatments. It's really a 2 month daily commitment - if the commute to a ccc is too distant they have hope houses you can stay in for the week, and commute home only on weekends. Admittedly it's a pain in the ass to have to travel however it's a short time frame and bottom line it could make the difference between being around to watch your kids grow up. You owe it to yourself and those who love you to do everything you can now to beat this disease. Do overs are a bitch and not always successful. So right out of the gate hit it with the best of everything. This means seeking out top care.
And as far as surgeries go, a top cancer surgeon/ ENT can make a difference in how well you speak, and eat post treatment, and whether they get it all and your rads and chemo is merely an insurance policy.
Hugs and welcome.
Last edited by Cheryld; 05-20-2015 06:08 AM.
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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