| Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | OP "OCF Canuck" Platinum Member (300+ posts) Joined: Jul 2006 Posts: 446 | Like many others, As the years have passed since treatment, I've developed a myriad of different medical issues that are treatment related, and most of them unresolved.
There are a wide variety of reasons they have not been resolved; lack of expertise, lack of willingness on the part of a hospital to take a risk, Politics, funding, etc. etc.; all valid to varying degrees and all leaving me where I started, only a bit more frustrated. Compounding the problem; four years ago my wife was transferred from where I was treated, to another much smaller city, in a part of Canada that has much less expertise in Cancer treatment and long term care afterwards.
The only saving grace? Some of you "old timers" will recall my cousin, the oral surgeon, who has played such an important role in my treatment and recovery....his practice is located close to where we now live instead of six hours away.
For the past four years, he has tirelessly fought on my behalf, pulling strings, getting me in to see this Doctor or that...trying to make some of these issues more tolerable.
Shortly after we arrived in the Province, The Government introduced a program for oral cancer survivors with 5 or more years survival. Once qualified, the Government would pay for up to $75,000 worth or restorative dental work, including implants, and permanent teeth. Like many, I'd lost the majority of my teeth during my initial surgery, and radiation had taken it's toll on the remainder.
Of course, nothing "Free" is ever truly without cost; the same rule applied here. First and foremost; residency. We had to be residents for two years before applying, so that immediately meant the idea had to be back-burnered for 18 months.
Once we reached the two year mark, we began the application and qualification process. Weeks turned into months, months into years. Examinations, forms, reviews, new examinations...does that sound familiar to anyone?
After nearly two additional years, we'd almost given up hope. We hadn't heard anything in months, and to further complicate things, my wife was told that she was being promoted, and we were being transferred BACK to our long-time home by September 1st.
I pretty much threw my hands up in dismay...all of that effort, and nothing to show for it....that is, until 10 days ago. My cousin called to tell me that he had me scheduled for July 23...For what, I asked....
He had just gotten off of the phone; My application had been approved, and he had been given authorization to proceed. He had vacation scheduled for this week, so he had nothing scheduled except some time relaxing at his cottage. Instead, he booked everything, and scheduled me for surgery Wednesday afternoon.
I'm thrilled, of course. Implant work in Canada is seldom covered to any meaningful level by insurance, so this is a HUGE deal for me from a financial standpoint. At the same time...I have a sense of foreboding. This will be another extensive surgery; he's expecting 5-6 hours. 14 extractions, implanting an "appliance" along the bone graft to increase the stabilization since I've experienced a lot of resorption in that area. At least 8 implant anchors placed within the radiation field....a bunch of other complicating factors. This will not be a procedure with much tolerance for error; it will either be completely successful, or a near catastrophic failure that would, at the very least result in going back onto a PEG, permanently.
I have complete confidence in his ability; what concerns me is the unexpected. There are just so many small things that could go wrong, and if any of them do, it'll be a failure.
I'm struggling to remain optimistic and pragmatic about it all. I'm not in a great place physically, and without intervention very quickly, these problems will become game-changers within months; this is really the best opportunity I've had for a long, long time.
I'm still concerned though, and I won't deny there is a fear factor there too. If I may beg your indulgence...keep your fingers crossed that it all goes well on Wednesday morning for me, would you?
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | 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 | My fingers and toes even are crossed for you. Wishing nothing but the best possible outcome for you!
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 | I too send you many, many positive vibes and thoughts. I hope that all this will go well without any further problems. 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: Jan 2013 Posts: 1,293 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,293 Likes: 1 | Good luck. Sounds like a pretty involved procedure. Send the pic when you bite into a huge juicy rib eye!
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: 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 | Wow, that's a good news bad news story if there ever was one. GOOD LUCK!
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: 559 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2013 Posts: 559 Likes: 1 | Good luck with the surgery, after so much wait, your time for positives has arrived.
Send that picture of you eating steak to me 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: 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 | Congrats!!!! You are so fortunate to have your cousin helping to get this past all the hurdles. What perseverance they showed with this. Now thats what I call a true advocate for their patient!
Best of luck with your procedure. Hope it works even better than you are expecting. 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: Nov 2013 Posts: 104 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2013 Posts: 104 | Good Luck! With so many chances of things to go wrong in the past 5 years, yet they went well. The same outcome will likely be on your side again. Enjoy the new smile 
Brian Stage IV TxN2aM0 HPV+ SCC 38 y.o. male 9/20/13 Sentinel Node Found 12/5/13 Start of 72Gy and 5 bags of Cisplatin 1/21/14 Treatment Ends 1/25/15 1 Yr clear
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