| | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | OP  Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | We tried this a couple of years ago and it's worth another try
Anyone battling this disease or caring for someone: write a story about your battle, let people know what oral cancer is, give some facts. Contact your local news media, (papers, tv stations, etc.). Find the health/medical reporter and let them know your story. Lets see if we can get these stories etc, in the publics eye.
I can help with any editing if you would like to run it by me. If we all try to get this in papers/media in our hometown, we can really make a difference.
Any thoughts or questions, let me know!! We have fact sheets I can email you.
You all have a compelling story I am sure, we have all been touched by this disease. Lets see if we can make something happen!
Thanks!!
Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | 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 | Susan, please email me a fact sheet. The way the media twists everything, its very important to get the correct info out. So much easier to do it right the first time than to need damage control later. Thanks!
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hi Christine, I will email you the current facts sheet that I have, I am also going to check with main office to see if we an add anything else to it, such as the new HPV statistic. check your other email, talk to you soon! Susan
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Susan, the fact sheet I have -- "Oral Cancer: The Facts" is dated 7/10. If you get an updated version, please send to me also.
Thanks!
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: 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 | There is an updated version that speaks to the HPV issue some. It is going out to all the screening sites in April. Anyone who wants one just ask Jamie or Megan at the office to mail you a new PDF file of it.
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.
| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Hi Susan, I will send right now the updated version.
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | 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 | The walks Ive been to have this flyer printed up for the people there to take. Is this something all of the OCF events should be handing out? People need to know about this important information!
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | OP Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Yes, all walks should have this to hand out. I email it to all of them, of course I can't be there allof the time to see that it is.
Susan Lauria - OCF Director of Events - Always looking for volunteers to help spread the word about early detection! Contact me if you can help!
*Brother passed away from tongue cancer in 2006 at age 47, was co-caregiver, he was non-smoker/casual drinker
LETS MAKE ORAL CANCER HISTORY!
| | | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2006 Posts: 2,671 | That is a good idea. I think I will check with the coordinator of the Chattanooga walk and see if they are planning to have handouts.
Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | | 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 | By the way, related to oral cancer awareness month/ April we now are approaching 500 events in the one month, and still have two more weeks to fill up the calendar with more. The OCF office has had to bring in helpers to send out all the packages to the offices doing free screenings. If your dentist or ENT isn't on board, give him a call. We'd like to hit 1000 locations in one month. http://www.oralcancer-screening.org/events/index.php?d=2011-4-01This is what we are asking them to do: http://oralcancerfoundation.org/events/oral-cancer-awareness-month.html
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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