#90853 02-27-2009 06:34 PM | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | I just wanted to let you guys know what a buzz my button causes. I wear the one everyday that says "have you had one" EVERYONE at work asks me about it. My employer even said we can have oral cacner screening there. Susan...I will have to talk to you about that. I am so stoked!!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Way to go Suzanne!! I wear one also just so people will ask what does it mean.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Is a killer hiding right under your nose? that one gets tons for me. People think it has something to do with national security.... Dental exams save lives, seems like an unbelievable statement to someone that doesn't now that that is where you get early detection of oral cancer saving lives. I had one, have you had one, are also available, and then there are the dedicated ones for the dentists office staff..... check them out in the store.
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: Dec 2008 Posts: 20 Member | | Member
Joined: Dec 2008 Posts: 20 | I love the buttons, too. I wear them at work and color coordinate them with my uniform of the day. I love it when my patients ask me about them. I wear them on my coats and sweaters to the store and church. I leave the brochures out at all my doctor and dentist's offices and put them in the waiting room where I work. I feel like I can't do enough to get the word out to the public.
59 yr old female Rad Tech T2N0M0 lt tonsil
IMRT x 35, no surg, no chemo.
Last treatment 11/18/08. Dealing with L'Hermittes sign presently.
Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC
Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
| | | | | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Can we clone you guys about a thousand times?
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 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I get the most out of the badge that says " Is There a Killer Hiding Under Your Nose ". I thought one lady was going to put a hole in my shirt she was trying so hard to read it. LOL I just took it off and gave it to her.
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: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | That is so great Suzanne, in fact Brian and I were just discussing setting up screenings for the volunteers in the future.
I think we have the best volunteers at OCF! I just love to hear good stories of spreading the message! Now if everyone on this board passed out buttons or wore them, just think how many people we could reach all over the country!
Thanks to everyone for their help and support!
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 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | I went to an appointment at the ENT clinic Fri and the ladies at the front desk asked for more buttons. One said that her's had fallen off her uniform. Some people have asked for extras to give to others. I have had buttons loosened and fall off because of a seat belt or my purse, they really have to be pined on carefully. I like to offer a choice of buttons. Everywhere I have given them out people have been very receptive.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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| | | | | Joined: Jun 2008 Posts: 475 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2008 Posts: 475 | Thank you Malka! I too am getting a good response as well. It really opens up a discussion.
Today at my sons basketball game I had one on and the woman sitting next to me, who I have been talking to all season, just noticed it and said her mother and cousin both passed away from mouth cancer. So of course we began sharing stories, mine about my brother and hers. Now we have a bond and of course I told her about OCF and the walks, she will be going to the Philly walk with her family and donating to OCF.
She was so thankful to talk to someone who "understood" what oral cancer was all about and she was not alone.
So it is amazing what a button can do.
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: Nov 2007 Posts: 681 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2007 Posts: 681 | I am out of buttons!! I had divided them up by sayings, each in a different one of the little bags. I showed them to the Prosthodontist so he could select some for his office. He asked "Can I have these?" He took all of them, walked out of the exam room and that's the lasst I saw of him!
I left a bunch of the brochures with the check out lady.
Brittany, I will contact you about getting more.
Last edited by Malka; 03-03-2009 02:56 PM.
SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
Support OCF
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