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Joined: Apr 2004
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"Above & Beyond" Member (300+ posts)

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Jerry,

I hope your efforts in the dental community can bring some results. I continue to be amazed (and discouraged) to hear about recent instances where a dental professional completely missed some obvious warning signs.

Within the past two weeks, I attended two charity fundraisers (for two completely unrelated organizations) and at both of them I happened to be seated next to people that I discovered were oral cancer survivors. One of them was diagnosed and treated within the past year, but the discovery of the cancer was delayed due to her dentist's inability to figure out the significance of her symptoms. It was only after she moved on to an oral surgeon that she got the biopsy she needed.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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I also heard a lot of innapropriate questions/comments from coworkers and friends. (I work with doctors and some of these comments were from them.) People are ignorant. Try to ignore them.


Mucoepidermoid carcinoma-intermediate grade. Removed 3/05. Additional surgery to get clean margins and selective neck dissection 4/05. 30 lymph nodes removed. All clear!!
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Jerry, I am so happy to read your post. I only wish more dentists and office assistants would do the same. My dentist and an oral surgeon missed cancer on my tongue (and it looked pretty bad). Finally, I was referred to my current oral surgeon and he took one look and knew what I had.
My son attends a college in NC, he told me that most of the guys on his LAX team "dip". Same with my daughter, she attends college in TN, she said most guys, even some girls walk around "packing a lip". They both told me about a commercial on TV with a young man who "dipped" from a young age and got oral cancer and is now very deformed from surgeries, and visits colleges to talk about it. God Bless this brave young man. Thank you Jerry for your efforts! I wish more were like you! Carol


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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p.s. I did not mean to pick on schools in NC and TN, a LOT of high school kids here in Baltimore also dip, it is becoming more and more the thing to do. It scares me so much!


Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10
---update passed away 8-27-11---
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Patient Advocate (old timer, 2000 posts)
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Cathy and Carol,

Thanks for your positive comments. I am amazed at how many of my patients "pack" tobacco. I guess, they think that it's somehow not as bad as inhaling smoke. This mind set unfortunately continues to exist.

One of the first oral cancers picked up in my office has to be over 25 years ago and it was from smokeless tobacco. Unlike other areas of the mouth where cancer can develop, these areas are very visible. The tissue changes are usually very large areas that are corrugated looking.
I guess all I can do is to keep on looking and preaching about somkeless tobacco.

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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Jenn,

Sometimes people just ask questions because they are out of their comfort zone and trying to extend their hand of friendship to remind you they are there. In the process they are making attempts at small talk to try to see where the conversation may steer itself. The problem is, like two rudderless ships, the conversation can't be steered anywhere. Find yourself a brief response that says, in your very own way, what you want them to know. Unfotunately, I would most likely answer with humor, that is just my nature.

For example, do you have a will? Why, yes, I have been told often I have a very strong will.

What will you do when your hair falls out? I would most likely file away my comb and brush and buy more wash cloths to make sure my bald head doesn't get jealous form lack of attention.

What will you do if they take out the rest of your tongue? I would have to move to a larger house because of all the extra friends. HUH? The only thing that has kept me from having a million friends has been my tongue so without it, I should be able to keep more and keep them longer.

OK, so they aren't the best. If you don't want to answer, just look at them with a blank look on your face and they won't ask any more questions. Tell them you don't really feel like talking about that right now but you would like to know... That helps them know what you want to talk about, at least.

Ed (aka Mr Useless answers)


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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