Previous Thread
Next Thread
Print Thread
#73115 04-15-2008 12:28 PM
Joined: Mar 2008
Posts: 46
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2008
Posts: 46
A local newspaper has read my blog and wants to interview me tommorow afternoon. I KNOW, Hard to belive! I was needless to say, very excited. A great opportunity to spread the work about Oral Cancer. What I am wanting to know, is if you had this opportunity, what would be the most important thing you would want everyone to know. My message is simple, get a screening as a precationary measure. Better way early than way late.

I was wondering what your reponse would be. I am sure that OCF will be brought up since it has been one of my biggest source of help. Thanks to all for that BTW.

John


Stage 4A SSC Left Tonsil, back of tongue and Lymph nodes on left side. Tonsil removed, Chemo and Radiation treatments completed on June 26, 2008.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
John:

Its an honor that you were chosen for an interview. My idea would have to be the same as yours. Mentioning OCF is very important as there is so much info and help on here. Screening to catch it early and making the public aware of how deadly this type of cancer are what I would talk about too. Good luck tomorrow smile


Christine
SCC 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 smile
Joined: Apr 2005
Posts: 2,219
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Apr 2005
Posts: 2,219
Congratulations John. I have done 2 TV interviews and one for a local newspaper. Unfortunately, you don't always get everything in that you want. However, it's great that you have this opportunity.

In addition to mentioning OCF, I guess the most important point that you might want to make is the "early detection, saves lives". You can get all the statistics about survival rates and the comparison between stage I diagnosis, stage IV and those in between from this site.

You want the people reading the story to ask their dentist or hygienist why they are not getting a thorough oral cancer screening, if they're not.

You might want to mention the VELscopoe as a fairly new adjunct to oral cancer screening. You can check this out at www.velscope.com Stress that this is an adjunct and not a substitute for an exam. Also you can mention that a thorough oral cancer screening is more than having your tongue pulled out and moved from side to side. You can get some ideas about how an exam should be done at www.sextetscreening.org

If you want to speak to me about anything before your interview, send me an email [email protected] with your phone number and what time I should call you. I'll be happy to talk to you about it.

Good luck and thanks for being an advocate.

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: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
I have also had many contacts with radio, Tv, newspapers, teaching at Moffitt and testifying before the Florida House. Tell your story from your perspective and from your heart. Leave the medical facts to the doctors. Tell the human patient side. If you were a tobacco user then warn about that; if yours was HPV + then try to educate your readers about HPV and the male and Oral Cancer connection. Make what you say believable and above all interesting. The more interesting, the more the writer will write.


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: Mar 2008
Posts: 46
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2008
Posts: 46
Thank You all for the imput. I plan on tellling my story but I think I just want my main focus after all of that to be that early prevention is the best remedy and to get a proper oral screening. We all know what trama can be caused by this. Bottom line....Education is the key here.

Wish me luck today.

John


Stage 4A SSC Left Tonsil, back of tongue and Lymph nodes on left side. Tonsil removed, Chemo and Radiation treatments completed on June 26, 2008.
Joined: Feb 2008
Posts: 341
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Feb 2008
Posts: 341
John - can't wait to hear how it went. I was thinking about you today and send prayers your way.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

Joined: Mar 2008
Posts: 46
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2008
Posts: 46
Well, I will tell you. It was not like I thought it was going to be. I found myself tring to help this poor kid who was way more nervous than I ever thought of being. I have a lot of opinions on the matter, but I am holding them in reserve until the article comes out. Will let you all know when It does.

John

Last edited by johnny47; 04-17-2008 07:35 AM.

Stage 4A SSC Left Tonsil, back of tongue and Lymph nodes on left side. Tonsil removed, Chemo and Radiation treatments completed on June 26, 2008.

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5