Hi,
I am new to this site. I am very serious about getting the word out to dentists and doctors about early awareness of oral cancers.
My husband died of tongue cancer on Thanksgiving night or 2005. He was 33 and knew of no syptoms or what to look for. He had a bad ulcer that wouldn't heal only to find out it was stage 4 cancer. I am not on this site to scare anyone but hopefully I can answer any questions you may have about radical neck dissection, flap reconstruction,skin graphs, tongue reconstruction, side effects of treatments after surgery for tongue cancer, etc.
I want to help oral cancer patients in any way possible. If the doctors told us his real prognosis up front, we may have skipped certain treatments and opted for quality of life (what little time Greg had left.)
Everyone on this site, patients and caregivers, seem very strong and courageous. I admire that in you. My husband fought to the end (not that many of you will have to because your prognosis may be better than his) but I commend him for his bravery as well as yours.
Keep up the fight and determination to hear that "cancer-free" verdict. I will try and fight for you on early detection with my Senator (whom I already spoke and a few men at the dental association.) I want people to know that what you and my husband went through is real and can be deforming and debilitating. We need a voice and if any of you have any questions for me, please feel free to ask.
I admire your courage.
Lisa

Thank You Lisa, I admire you and I am very sorry to hear about Greg's passing due to this horrible disease. Thank you again and if you think I can be of any help, please email me. I had Stage IV tongue cancer, two lymph nodes involved, diagnosed 4 years ago, had all of the above that you mentioned and 7 weeks of radiation. Mine too started as an ulcer that would not heal, I was given antibiotics for months, until finally sent to the doctor who diagnosed it. ...Love, Carol

Hi Carol,
I am so happy that you have been four years removed. I know it was a hard road for you but I am glad you seem to be coming along. Greg had three lymph nodes involved but one had pierced through which meant it already had made it's way into other parts of his mouth. Unfortunately it was microscopic so the doctor swore he got it all but we knew otherwise.
My mission is to make doctors ans dentists aware that oral cancer is real and that once you have it, you suffer with it everyday. Whether it be speech, swallowing, deformity, eating, etc. The dentists we encountered couldn't tell the difference between cancer and a canker sore. That's pretty bad. Thanks for your uplifting experience.
Lisa

Hi Lisa,

I have sent you a personal email and hope that you find it there.

Jerry

Thanks Jerry for your e-mail. I did receive it and wrote you a novel back. Every dentist should follow your example. I'm glad you were able to find your cancer early. There are many people like my husband, who weren't so lucky.
We really need to keep pushing for early awareness.
Lisa

Lisa,

Thank you for your efforts with regard to the "early detection" and I am sorry to hear about your husband's passing.

I share your sentiments regard your dentists. We faced a similar situation. My spouse had seen a dentist two times within a six month period before she was diagnosed by an ENT. The dentist had completely failed to the detect the cancer on the side of the tongue on these two occasions.

Again, thank you for your efforts.

Vin

Thanks for your post Vin and I hope your spouse is doing well.
What will it take some dentists before they know this can be deadly??? It has to hit them personally before they will care. It is really sad if they get nothing out of it (no extra pay or incentives) then to them an oral cancer screening is just a waste of their time.
Pity on them. I'm sorry your spouse had the same useless 2 visits to the dentists as my husband did.
Lisa

I had a very positive experience with my dentist. At every visit he made sure to pull my tongue out and check all sides of it. At first - a few years ago when I first started to see him - I thought it was silly to do this for someone under 30. Then, around Thanksgiving 2005 - he saw a sore on my tongue that I had ignored for months and months and HE was the one who initiated the discussion of how long, why didn't you tell someone etc etc etc. I thought it was nothing - and hadn't even planned on mentioning it at this visit. He tried a few things for me - steroid mouth rinse, polishing the cusps of my teeth etc, but none of them worked. In the meantime - he had already made me seek an appointment with the oral surgeon for my wisdom teeth extraction and to look at the ulcer on my tongue. I saw the surgeon a month later - the delay was b/c this surgeon couldn't get me in right away - b/c I made the appointment for my wisdom teeth extraction consult and didn't mention the ulcer (I'd have gotten in sooner if I had really believed it was cancer). Once he saw it - he pushed for the biopsy ASAP. I feel my dentist literally saved my life - b/c if it weren't for him - I'd still be walking around with an ulcer on my tongue and I wouldn't have done anything unless it had gotten a lot bigger by this time.

Hi Amy,

Thanks for a vote for the dentists that do screenings. Unfortunately, there are more stories like Vin's and Lisa's than there are like yours.

You and I, and Lisa and I have had some private discusions on this subject and you both no how disappointed and frustrated I am with so many members of my profession.

We can all help in our own way. Lisa will be passing on to her previous dentist a modified version of an article that I wrote for SPOHNC in their newsletter for oral, head and neck cancer survivors. I know some OCF members get this newsletter and had a chance to read it. I recently rewrote the article for a dental journal and it is being mailed out this week or next. I believe it will reach most of the dentists in PA and many in NJ. This is one of my little things to try to make the wake up call for "early detection".

After it is published, Brian will be putting it on the website.

Jerry

Jerry,

I have a dental appointment on Wednesday morning - if you send me your article - I'd be happy to share it with my dentist as well.

Amy

It's on it's way.

Jerry

Amy,
I am so glad you had a good experience with your dentist. I now go to my Mom's dentist who also has been doing oral screenings regularly forever and if we go every six months, like we and everyone else should, this may help with early detection for most of us.
I'm not saying ALL dentists don't do screenings but it is a lot less than the 90% the NJ Dental Association says it is. If they were right, then why hasn't the number of oral cancer patients declined over the years. It is still the same mortality rate. That proves they aren't "kicking it up a notch."
Again, this is a "me generation" and if it's just another thing to add to their dental routine, maybe most can't be bothered. Someday they will learn, we hope!
Thanks for your post and your prognosis seems to be very optimistic??? Kudos to your dentist!!!
Lisa

Jerry,
When you give me the go ahead, I would love to send my husband's dentist the article as well as the two "experts" at the NJ Dental Association.
I saw your above post telling Amy I was going to send it but remembered you wanted me to wait until you got it piblished yourself.
Just tell me when???
Lisa

Lisa,

Since Amy lives in Ohio and she is going to see her dentist tomorrow, I figured it would be OK for her to pas it on then.

I feel kind of funny about it being out in our area before it is disributed by the dental association. I will definately let you know as soon as it is out. I am anxiously checking my office mail every day.

Thanks for all that you are doing to help spread the word.

Jerry

Thanks Jerry,
I will just wait for your go-ahead.
Lisa