| | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Great job Teresa! You seemed a natural on air. Thank for sharing your story with the �world� � it took a lot of courage to do what you did.
I didn�t know much about oral cancer before I was diagnosed. I thought it was a disease of older men who smoked and drank a lot. How wrong I was! Hopefully this show will bring the message that it can happen to anyone at any age, and encourage people to heed the warning signs.
I wish you continued good health!!
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Dec 2007 Posts: 5 Member | | Member
Joined: Dec 2007 Posts: 5 | Wow, I posted the ABCnews story on the HPVSupport forum. It concerns me that there are people on their boards that say oral disease from HPV is so rare, that only people with immune disorders like HIV have to worry about it. That's just crazy and I want so much for people to know they should disclose their diagnosis to their dentist or family doctor....so they can keep an eye on them. Anyway, I'm sad to say that the moderator deleted my link to the ABC story. They don't want to "scare" people. | | | | | Joined: Jun 2007 Posts: 214 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2007 Posts: 214 | ChristineB, Susan, SABW, thank you. It was not an easy thing for a 'prude' like me to do.
I just finished an extensive taping for "The Doctors" which should be more clinical and in-depth, and less sensationalistic.
I come across as healthy and well, and yes I did tolerate treatment far better than most, but be assured that I tried to emphasize that there are people out there truly SUFFERING from not only this disease, but the permanent side effects that are lifelong. It's not over once you are in remission, this treatment stays with you.
Left tonsil SCC, HPV+. T2N0M0. Tonsillectomy 3-07, bilateral radiation, cisplatin 3x, Tx completed 6-06. Clear PET 4-01-2008.
Thyroidectomy 5-9-08, resulting in permanent surgically-induced hypoparathyroidism and adrenal problems. Bummer.
| | | | | 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 | Thank you for updating your newest project. Very nice of you to put yourself out there for people to look to. Please let us know when this will be out, I know sometimes there can be quite a lag time on these things. You are absolutely correct with the long lasting effects. Im one of the ones who suffer from some of those issues like trismus which isnt fun. I also know Im also a lucky one, many suffer far worse senerios than that. Its the positive outlook which needs to stay with you alot more than any lingering side effect does. Thanks again, we are proud of what you do 
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 | What is the Doctors? Is that that show I've seen advertised with 4 doctors on the screen? I believe it's a daytime show. I don't get out much.
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | OP "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | Yes, "The Doctors" is a new syndicated show on medical issues. Here in DC it's on in the late afternoon, just before the local news. It features four physicians, each from a different specialty, and is a spinoff of the "Dr. Phil" show. (An aside: A couple of years ago, one of "The Doctors" was the bachelor on ABC's "The Bachelor.")
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: 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 | Sounds interesting. Hope its going to get some good info out to the public, I know Teresa will do her best to see to that. Between Dr Phil and the Bachelor it should have quite a following
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 | Teresa,
Let us know when it's going to air, if you can.
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 | Teresa,
Please let us know when your "Doctors" episode will be airing.
Keep up the good work.
Jerry
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | I have spent two hours in the last couple of days with two producers from The Doctors, giving them background information on the disease, incidence rates, causes, HPV, etc. etc. They have their own staff, talking head dentist, who is going to be doing the TV segment, not an oral cancer expert, nor someone out of research, or cancer treatment, like the oral oncologists I gave them to call, and I am not allowed to talk to him. All we can do at this stage is hope that with all the backgrounder, and a smart patient, that they get the story right. Who knows what their dentist will say..... http://www.thedoctorstv.com/
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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