| | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | I had my first visit Friday I was actually his only patient. I asked about the response from his staff that it could be weeks or months before I would get in, he indicated that he can't take everyone and IF there is not already a diagnois for cancer it does take months. He said he had promised my Oral Surgeon he would see me last week. I just missed that in the conversation somewhere. I did really like him, I didn't take anyone with me but I went with pages of questions which he patiently answered.
I am scheduled for a PET Scan Friday and a mtg with the Speach Therapist. He also is getting the original sides to confirm that it is intermendiate grade.
He did indicate that I will have further inpatient surgery with a skin graft.
I don't understand the following first, why will I be in the hosital for several days? Second why will I be out of work for longer than a week. The area he intends to remove is about 2 inches on the left lower lip w a skin graft from Thigh.
I know for many of you these are no brainers but even with research I don't quite understand.
I be taking my husband and maybe a close first next Tues for results.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
5/25/2025 All Clear
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Debbie,
I still think he and his staff needs sensativity training, there are better ways to get things across...especially if you've already identified yourself as a cancer patient. I've had to deal with idiots like those over the last two years and I have no patience for them.
The proper response after being identified as someone with cancer referred by an Oral Surgeon would be that they would make sure the Dr got your file ASAP and then get back to you as soon as the Dr had a chance to review it. For the patients peace of mind the person answering the phone should relay that they'll do everything they can to make sure the Dr get's your info...after that it's on the Dr. But leaving a newly diagnosed cancer patient to believe it will take weeks or months to even get a consult is akin to psychological torture and is just horrible business practice to boot.
Tangent aside, before getting a PET/CT scan and reviewing the original sides, the Dr really doesn't know how involved your next surgery is going to be...so I'm thinking the recovery time is an estimate. I just had a skin graft on the inside of my mouth with donor tissue from the hip/groin area. Your mouth is going to be stitched/sutured and likely gauzed up for several weeks. My skin graft was done over a month ago and not all of the stitches have dissolved yet. But these are also questions you'll want to address.
Great job of bringing in questions, bringing someone else with you is always helpful as they'll think of questions you might not...and it's good to have that support. Dr's are notorious for not giving out information..you have to pry it out of them, I've often thought about subjecting them to waterboarding myself.
Good to hear that you like this guy and that things seem to be going good. Don't hesitate to ask any questions on here..that's what we are here for.
Good luck,
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 |  I was just thinking about my upcoming PET scan. I realized a couple of days ago that my Mini Schnauzer Largo has spent the last few months taking every opportunity to sniff the spot on my lip where the cancer was. Since it was removed about a month ago he no longer pays any attention to that area or any part of me. So I am thinking I have already had a clear "PET" scan.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
5/25/2025 All Clear
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Animals have been able to sniff out cancers before, I pray that your dog is right on the ball for you.. Good luck and the best to you.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | 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 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Seda,
First of all, I love mini schnauzers and have had 2 myself.
Second, love the joke.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Jerry -
You can keep your doggy pet scans ...
I prefer cat scans, myself.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Love dogs, not too crazy about most cats.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Jan 2010 Posts: 142 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jan 2010 Posts: 142 | The last 2 weeks have truly been the worst weeks I can ever remember. I found that being diganoised with Oral Cancer is a very lonely place to be. Not to fault my family and friends who could not have been better to me, well most of them. I will be letting the ones who weren't know how badly they can hurt with just a few words. But I am not sure how I would have made it to this point, without this group and those of you who answer the same questions from us neebies time and again with patient understanding, you are wonderful people and I thank you from the very Bottom of my heart!!!!! AND I include those of you who kicked me in the back side to take action as well. I had my Pet Scans and LARGO WAS RIGHT!!!!! Not only is there no further spread of the cancer BUT there is minimal left behind and I am now so HAPPY TO ONLY, who ever thought that would be good news, be facing One more surgery!!!! Which may not even require a skin graft!!!!!!! I will of course be followed for years but that is ok  I am not leaving but I had to share this with you guys first.
55 12/17/09 High Grade Muceopidermoid Carcinoma Alerted by Largo my Mini Schnauzer
1/18/10 Clr PET
1/27/10 Surgery found Perineural invasion
3/22/10 Began Rad
05/05/10 34 rads
8/19/10 Clr Pet Scan
12/13/10 Clr Ultra sound/biopsy
5/4/11 MRI Clear
8/2/11 All Clear
5/25/12 All Clear
6/3/2016 All Clear
5/25/2025 All Clear
| | | | | 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.
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