| | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | davidcpa: Massey is VCU.
OarC: Don't let geography be the primary factor in determining where you go for treatment, especially since the closest NCI-designated facility is being difficult. Some on these boards have traveled thousands of miles for treatment after their initial diagnosis.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | | 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 |
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: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Amen to everything everyone has said so far. Please treat this as urgently as you would if your hair were on fire! Just do it, and do it NOW!
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: Jun 2014 Posts: 4 Member | | OP Member
Joined: Jun 2014 Posts: 4 | Thanks, again, for your advice, support & field-tested knowledge.
Finally, I met one of two surgeons assigned at the VCU Massey Cancer Center (Richmond VA), today. After gentle prodding & an endoscopy by the doctor & his student, he said there was no appearance of cancer beyond the gums, though it probably is already eating bone (CT & PET scans will clarify in the future).
He suggests that one surgeon remove the left half of my lower jaw & left neck lymph nodes. Simultaneously, another physician will remove a leg fibia bone for jaw replacement material. Surgery including facial reconstruction should be completed in 10-12 hours with a 90% chance of initial success. Initially, feeding through a peg tube & breathing through a tracheostomy tube should be anticipated along with substantive swelling.
His fellow surgeon is scheduled to meet me in 6 days. Today's ENT & Reconstruction surgeon is also referring me to a Radiation Oncologist in the Cancer Center.
He suggests I get the surgery done within the next few weeks, but noted I might find a Radiation Oncologist (outside the Massey Cancer Center) who would recommend trying radiation before surgery. In his experience, scarring from radiation makes surgery more difficult.
We discussed sources for second opinions including "celebrated (his phrasing)" CCCs.
OarC... Richmond VA
positive gum biopsy: 6/16/2014
| | | | | 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 | He's right about the scarring, more so radiation causes tissue damage that can lead to poor healing. It's very hard to operate on someone who's had radiation - it leads to poor tissue perfusion and leave patients open to infection. The surgery he described is very invasive but many have done it. 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
| | | | | Joined: Jun 2014 Posts: 56 "OCF across the pond" Supporting Member (50+ posts) | | "OCF across the pond" Supporting Member (50+ posts)
Joined: Jun 2014 Posts: 56 | The longer it's left, the more treatment you may have to have. xx xx
Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
| | | | | 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 | Of course, there are plenty who have had to have surgery after radiation.
Most do well.
Of course surgeons want to cut. Radiologists want to irradiate. That's why a team based approach with a tumour Board deciding on your treatment is the best option.
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: Jun 2014 Posts: 4 Member | | OP Member
Joined: Jun 2014 Posts: 4 | Initiated a second-opinion review appointment (probably, weeks away) at John Hopkins, today. CT scans are scheduled at the VCU Massey Cancer Center next week. Feel I'm swimming in molasses, but much relieved to have a plan & encouraged by advice, here.
If Hopkins concurs with the Massey Cancer Center staff, I'm ready to roll. My Significant Other of 21 years, tied the knot with me last night-- not the noose knot, the marriage knot... :-)))
OarC... Richmond VA
positive gum biopsy: 6/16/2014
| | | | | 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 | Awww! Congrats on your marriage  Sounds like everything is beginning to get worked out. You are heading in the right direction.
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 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 | Tough decisions but it sounds like the best course of action.
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.
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