#50126 12-14-2006 04:48 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Dear Brian, Gary, Jerry, and everybody else. There is an article in this week's issue of Newsweek (Dec.18, featuring the Nativity on the cover) that is written by a young woman who had a parotid tumor that she feared might be cancer. She feared losing her smile because of the necessary surgery. It turns out that she did not have cancer, and that the benign tumor was able to be removed with little adverse effect. It is interesting that I have been so moved by my own experience....by my losses, my possible losses, and my recovery, both of health and of my various neurological insults, ....that I had even thought of writing a similar article.....to Newsweek. It was going to be called "By the Skin of My Teeth," since I have had a maxillectomy because my dentist overlooked a lesion on my gum. My point in writing now is to suggest that this current Newsweek article, though it is a little shallow, opens a door for some valuable exposure of the issue of oral cancer, the importance of early detection, and the responsibility of dental care professionals to be vigilant in both their training and their practice of examination for oral cancer in all its forms. Brian, I think that, if you have the time, as the leader of the OCF, it would be great if you could write a letter to the editor. In fact, there is NO reason that a large number of us shouldn't write, saying whatever you are moved to say. The instructions, as printed in the magazine are as follows: LETTERS TO THE EDITOR must include name, address, and daytime phone number. They should be e-mailed to [email protected] , mailed to P.O. Box 2120, Radio City Station, New York, NY 10101-2120, or faxed to 212-445-4120. Letters may be edited for space and clarity and may appear in electronic versions of Newsweek. So....what do you guys think? Is this a place where we should/could make an impression on a large number of people about the reality of oral cancer, the importance of not using tobacco, and the necessity for early detection?? I'll write if some others do.....or, Brian, would it be better and more appropriate for you to represent the rest of us by writing in the name of the Foundation?
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50127 12-14-2006 05:05 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | August,
I will try to get a copy of the magazine tomorrow. I would like to read it before making a decision about contacting the editor.
Thanks for bringing this up.
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"
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#50128 12-14-2006 05:15 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | You can read the article online at www.newsweek.com Click on "My Turn.' The article is not especially well-written, but it does perhaps offer an opportunity for response. I'll be interested to know what you think about responding.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50129 12-14-2006 07:36 PM | Joined: Mar 2002 Posts: 4,916 Likes: 61 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 61 | The more people who write the more they will realize that it is an important newsworthy subject, perhpas needing more exposure. EVERYONE that has a story of early detetion, lack of it, need for it, survival, loss, the lack of public awareness of the disease, the risk factors etc. etc. WRITE ASAP. Magazines do not kmow they have hit a nerve that needs exploration until they get feedback...tons of it. I will join in but I am only one voice. Bombard them everyone. THere are so many personal stories, so many angles to work, between all of us we could cover a lot of bases. Time is of the essence before they think that no one noticed the article. Good catch August!
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. | | |
#50130 12-15-2006 04:18 PM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | August,
Thanks for the link. I did check on-line and had no idea that that was the link to the story you mentioned.
I will get off an email to Newsweek tomorrow morning. I probably will attach the article I wrote about my story on the importance of early detection. You never know, they may be interested, but it was previously published and I don't know the rules.
Jerry
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"
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#50131 12-15-2006 06:20 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | I'll write also....from a personal prospective, since some of you more experienced people have more actual information than I have.
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50132 12-16-2006 01:45 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | I submitted a letter, and I received an automated response from Newsweek. Here is some advice included in that response (It might have been helpful to know these things in advance of writing.)-- 1. Include the date and title of the article to which you are responding in the subject line of your email. 2. Keep your letter short--only several paragraphs. 3. Do not expect publication...but try anyway....because SOME letters do get published. If WE don't respond, then who will? Please respond to [email protected] Several of us have written to the editor requesting that he/she consider researching and writing a feature article on oral cancer. I have no idea if this letter will actually reach anyone at a decision-making level or not. It's worth a try!
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#50133 12-19-2006 03:50 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | I'm about to try to send a letter. Bringing this back to the top. Bombard them folks. Here is our chance to bring the importance of early detection to the forefront. She got lucky, the rest of us know that is not always the case. We need to make the point that you have to follow up on symptoms even if you don't fit the 'profile', tests need to be run to make certain it is not cancer regardless of age. I think previous post said to send email to [email protected] and include subject My Turn 'My Smile is Worh More than Face Value' Dec 18 as subject line of email. Let's make some noise guys and get them to do a follow up article on oral cancer and early detection. Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#50134 12-19-2006 05:14 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Bringing this back to the top.
What's with you folks? Let's get some letters going!
Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#50135 12-19-2006 05:50 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 794 | Thanks, Eileen, I wrote a letter to the editor. I imagine that mine was too long, but we'll see. The mag. comes out tomorrow, so I don't imagine that they had time to edit it, but you never know. I also tried to send a letter to [email protected], but it was returned. I had asked that they consider doing a feature article, and sugg. that they begin with Brian and the Foundation for their initial information and guidance. But they never got that one. Maybe I need to send it on paper. I'll do that, though it might have to be after Christmas. So......everybody, please DO write a brief letter to the editor, as Eileen says, so that they realize that there are many people out here who have more to worry about than our smiles!!
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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