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#141511 10-13-2011 09:15 AM
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4real Offline OP
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Hi everyone,
Im here again for a little advice.
Im 47 longtime dipper. Havent chewed in over a year.
I used to put the dip in my upper lip for most of the years.

A couple months ago my upper lip didnt feel right, sore like in the very tip, just off and on. Then about a month ago, it started hurting all the time. I went to the ent, and he said there is nothing he could see that looked troubling.
It is now persistent, and really irritates me when I breath through my mouth, while Im working out or cutting wood. I went back to the ent, I think he thinks Im nuts ( I just may be )
He states there is nothing that looks suspicious. I seen on the nci website that lip cancer can be just pain and numbness with out the sign of a tumor or white patch. It just makes me more paranoid. He said to give it a month. He is supposed to be a good doc, did a round at rochester, and has seen lots of cancer. Now even the tip of my tounge seems numb. Its odd that where I chewed would be painful like that . I guess Im just looking for some backup as to what to do. Im alone, lost my wife a year and a half ago. Im on disability and have all day to sit and worry about this. Im trying hard not too.
Thanks for any replies

Dave

Last edited by 4real; 10-13-2011 09:24 AM.
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"OCF Canuck"
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If you're still concerned get a second opinion at a ccc - that's th best place. In The meantime, try to find somethin to occupy your time.!good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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4real Offline OP
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Thanks for the reply Cheryl!
I called a ccc and told them my situation.
They may tell me to continue with current doc, which is fine.
I may just be paranoid, and hopefully thats all I am.

Dave

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"OCF Canuck"
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You know what - better safe than sorry!!!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Hi Dave,
I will tell you that when Kevin called me from work and asked me to make him a Dr appt because he had had this swollen lymph node for several weeks, I panicked. He really has not been sick with more than a cold for the 30 years we have been married. I had only seen him vomit once...before chemo!
Anyway, the doc treated it like it was nothing. I started really paying attention and realized he could not hear me as well, he cleared his throat often, his voice had changed and he had complained of ringing in his ear. ALL symptoms of OC. They would not listen to me and Kevin wouldn't let me push it because he wouldn't even consider it. The docs kept saying he just didn't fit the profile of someone with OC.(He fit the profile of HPV OC perfectly.) I even cornered our GP at a party and told her she was wrong and I was sure he had cancer. She just looked at me.
Kevin works out of state for 3 weeks at a time and went back to work. By the time he got home I had an appt with the ENT and after several more weeks got them to do a biopsy. Lo and behold....Be your own advocate. DO NOT let anyone make you think you are crazy. Find someone that will listen and do a small biopsy of your lip. Maybe even just a dermatologist. Go with your gut Dave, trust me!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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4real Offline OP
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Thankyou Kathy

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Dave,

I went to three doctors. Mt GP said he had seen cancer and this was not cancer. He did send me to an oral surgeon because I insisted on a second opinion. The Oral surgeon (who had treated many oral cancers) said this was not oral cancer. Since he could not tell me exactly what it was I asked for another opinion. He sent me to an ENT. Guess what? Oral Cancer.

The ENT let me know that oral cancer is fairly hard to detect by eye at very early stages (it just doesn�t pop out at you) most doctors detect it in advanced stages. The earlier you get these things the better. Get to another doctor and ask for a biopsy.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
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Dave:
I'm living proof that there's something to the "gut" feeling. I had to argue with my GP and two ENTs to have my tonsils removed because needle biopsy came back NEGATIVE. Something just didn't "feel" right - all started with me accidentally finding a tiny, soft swollen place under chin that bugged me. All said adult tonsillectomies were bad and "Let's just wait and watch the swollen gland (they said from sinus infection). I begged, pleaded, then insisted on having tonsils removed. Yep, squamous-cell cancer underneath and wasted 3 months to where it spread to other side nodes. It will hurt no one to have a biopsy done on your lip - hopefully there is nothing there, but you will KNOW and not have to worry. Good Luck.

julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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4real Offline OP
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An update
lip problems have been better. Ive been taking alot of b complex vits and seems to be helping.
But Im continuing to have pain in my upper gum where I used to dip. Behind my upper front teeth it seems purplish to me. I have been to two dentists, one oral surgeon and my ent. They all say every thing is normal. One stated that my lower teeth are probably just causing some irritation. Im really frustrated. I even called a ccc and explained my problems and they said to continue with my ent.
Thanks everyone for your responses. I have to go out of town for five days, so wont be able to accomplish anything for a little while.


Dave

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4real Offline OP
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I had called this morn and was going to make an appt for when I return from out of town, they said they could squeeze me in around noon. So I went to the ent again and this time he said its irritated but not cancer or precancer, he thinks its mucal, and wants me to gargle with some mouth wash for a couple weeks. He said no reason for a biopsy and doenst want the irritated area to take longer to heal. I want to be happy with the results but still left with that uneasy feeling. The office called this aft, and said the results from the blood test came back good, I then asked to get a biopsy, they are setting me up with a second opinion with another ent in the clinic in the morning, will see what happens tomorrow. Hopefully Ill get the biopsy and will be withpeople for quite a few days to take my mind off of this.

Thanks for listening

Dave

Last edited by 4real; 11-01-2011 04:33 PM.
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It sounds like you are doing a great job of advocating for yourself. If a negative biopsy is the only thing that will set your mind at ease, then push for that. Good luck and I hope very much that your doctors are correct and you do not have cancer.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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4real Offline OP
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Thankyou Tracy, and good luck to you as well.

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"OCF Canuck"
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Good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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4real Offline OP
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Thankyou Cheryl.

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What's happening????


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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4real Offline OP
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Hi everyone,
good news so far, had a biopsy done on wednsday they took three small samples. They called and said no cancer, I dont have the report but they said nothing to be worried about. Nothing even looked precancerous.
The doctor said possibly shingles causing this irritation.
I will update when I find out more.

Thankyou all
very much

Dave

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"OCF Canuck"
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Awesome!!! Congrats!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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That is GREAT news. Now you can move on without worrying!! Like Cheryl said...Congrats!!


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14
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Posts: 596
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I'm so glad to hear that your biopsy was negative! I am also glad to hear that you acted as your own advocate and got the biopsy. NO ONE can look at tissue with the naked eye and say for sure that it's nothing until they get a slide under the microscope. When I had my biospy, the oral surgeon said it could be a list of 20 things and cancer was at the bottom of the list, but he wanted to be safe and rule out cancer. I didn't fit the profile, but it was cancer. Your instinct is the first thing you should follow and I'm so glad you came here to demonstrate that to others. Good luck and good health!
With care,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
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4real Offline OP
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Thanks everyone and thoughts and prayers to all.

Dave

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4real Offline OP
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Hi everyone
the results of my biopsy
hard palate biopsy-Hyperkeratotic and Acanthotic Squamous Mucosa with Underlying Fibrosis. Negative for Malignancy.

Ent said nothing to worry about, I am stil having problems and I questioned him about a possible nasopalatine cyst, I brought him an panoramic xray I had done and wanted him to look at. He glanced at it for two seconds and said looks good.
I hate it when they treat you like your a dummy. I may be in left field but he cant seem to cure my problems either.
My alveor ridge behind my front teeth is reddish and swollen and burns along with some of my rugae.

I asked him a bout a ct but he dismissed it saying we dont need it with the xray. I hate to get another one I had one back in april. But peice of mind is also nice. Thanks for listening I dont know much about the path report if anyone wants to chime in please do. Thanks for listening

Dave

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always go with your gut. you need to find a new ent that listens to you and someone you can trust. Get another opinion.


2006 SSC on tongue surgery and graft-Microinvasive no radiation. 2mm.
10/2011 moderate dysplasia-surgery
Nov 16, 2012 moderate dysplasia - surgery with graft planned MD Anderson
non smoker, very light drinker, HPVneg, eat well, love exercise.
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"OCF Canuck"
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Agreed!! Good luck!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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I'll say AMEN to the suggestions from others. I hate to keep changing doctors, but when you get such "flippant" answers to problems that are really bothering you, you do need to find someone else. Good luck - I've been there.
julieann


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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4real Offline OP
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Thanks all!
I set up an appt with an oral pathologist at the U of M
looks like a couple week wait but I have to try another route.

Dave

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