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#50055 05-15-2006 04:06 PM
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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

#50056 05-16-2006 01:58 AM
Joined: Jan 2004
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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


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---
#50057 05-16-2006 05:30 AM
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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

#50058 05-17-2006 06:13 AM
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Hi Lisa,

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

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"
#50059 05-17-2006 02:47 PM
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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

#50060 05-17-2006 06:17 PM
Joined: Oct 2005
Posts: 126
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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


CG to wife;
Jan 2005 DX SCC Tongue T2N1MO; RND surgery Mar 2005; 35 XRT and 4 cisplatin completed Jul 2005.
Dec 2006 tongue surgery, Scar tissue no cancer.
Feb 2010 neck node FNA - negative.
2010 ORN right jaw plus fracture
2015 ORN left jaw plus fracture
Feb 2016 Lower jaw reconstruction by Fibula free flap+titanium plate - Permanent G-tube
June 2016 Difficulty breathing - Permanent Trachea tube
Dec 2019 DX Cervical cancer - Stage 1 - Surgery Jan 16 2020.
15-20 esophagus/larynx dilations

#50061 05-21-2006 03:22 PM
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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

#50062 05-21-2006 04:09 PM
Joined: Feb 2006
Posts: 136
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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.


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
#50063 05-22-2006 11:38 AM
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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

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"
#50064 05-22-2006 12:12 PM
Joined: Feb 2006
Posts: 136
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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


SCC Right Lateral Tongue T2N0M0 Dx 01/12/06, Surgery 01/25/06. Partial Glossectomy, Bilateral Neck Dissection - 22 lymph nodes - all clear. No radiation.
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