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When my husband was on his fourth doctor for the lesion under his tongue, the three before had told him it was a virus, he took one look at it and told him it was cancer. He just so happens to be a pathology professor at Columbia Presbyterian. I had gotten his name from our dentist because I thought my daughter had wisdom teeth that needed pulling. I sent my husband there thinking maybe he had an abcess being the tumor was now visible on his jawbone from the outside. He was sore from the biopsy so I called our dentist, the original misdiagnoser, to get a prescription for Percocet because he had evening hours. When I explained the diagnosis to him he had the nerve to say "Are you Sure? Cancer doesn't usually hurt". Well I guess when it had progressed to stage 4 and wrapped itself around the jaw-it might just hurt alittle,duh!
Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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I had the news given to my by my oral surgeon. Its something I will never forget on 6-15-07. My oral surgeon had a nurse in the room with us and and sat down looked directly into my eyes and said "Im very sorry your results came back and you have cancer". He was genuinely sorry, I could see it by the look on his face. He also was the one who got to tell me for a second time too. This time, he looked very very sad when he told me.

My oral surgeon is a very skilled, compassionate doctor. He tells people directly and takes the time to answer the million questions that follow. I feel very fortunate to have such a good doctor.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I had the news confirmed by my Dr calling me in, then calling another Dr right in. He told the other one to go ahead because I knew what I had and just wanted that 2nd opinion. I was comfortable with it. Then the games began. LOL and are still going on.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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After 18 months of "playing" with my right ear ache. My nodes on either side of my necks swelled up over night. Sending me back to my GP. He treated me for almost a month with antitbiotics. He then sent me to my first ENT. Both assuming I had a peritonsilar absess. My tonsils were removed the next morning. The ENT tells me now that he "knew" the minute the scapel touch it. He tried to tell my husband in the waiting room that morning, that there was a good chance it was cancer. My DH is not very good at those kind of word games so he missed it completely. I went to my follow-up appointment by myself. First this Doc said was "where's the rest of your family?" I said, "why do I need them for a re-check?"
He then told me. There was lots of crying. He looked like it was his fault. He also got his staff on the phone to schedule every appointment I would need to get started. They also talked to each office telling them that I was unisured.
He really went out of his way to help. He's a very good doctor. More importantly he is a very good man.


40 yr old. Stage IV SCC found left tonsil. PET/CT shows cancer on base of tongue, floor of mouth, lymph nodes on both sides. HPV 16 pos. 6 weeks of cisplatin, 43 days of radiation. 73gy on each side.
ND March 2, 2009
reoccurance dx'd Aug 19, 2009
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It was August 2001. After enduring a terrible sore on the side of my tongue for god knows how many months, a cavity finally got me off my butt and into the dentist. The dentist took one look at my sore and referred me to an oral surgeon. In his office, under local anesthesia, the oral surgeon proceeded to cut a 3cm lesion off the side of my tongue. He then sewed me up, Fed Ex'd the sample to Shands and sent me home. Two days later I got a call that I needed to come to his office that day, August 27th(1 day before my 25th birthday). Somehow I already knew what they were going to tell me. I called my parents and told them they had to leave work and come with me. I still can't believe I let him do all that cutting without ever doing a biopsy or scan beforehand.


Age 33, NS, HPV-
8/01- At 25, SCC on tongue,3cm lesion remvd. L nk diss clr nodes
10/07- 2cm SCC remvd from L tongue
4/08- SCC on L tonsil,tonslctmy,2 wks later PET showed golf-ball szd tumor in tongue.
PEG.IMRT x 35 Cisplatin x 3 ended 7/08. Peg out feb 09 -Clear PET Dec 2010
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Posts: 489
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I was told the first time on July 18, 2006 by my oral surgeon. I twas the day after my divorce was final after a very long 3 years of delays by the ex. He was very nice and compassionate when he told me and he looked like he was ready to console me when I reacted. I just looked at him and said "OK what do we do next?"

I found my second tumor when I was at work one night just a couple of days before my next check up with my ENT. I knew what it was when I saw the little bit of red peaking through my skin graft in the floor of my mouth from my first surgery. When my ENT came into the exam room on June 6, 2008 for my appointment and asked me how I was doing I responded, "Well I think that we have a problem." We did the biopsy and she called me on the phone the next day and said that she was just confirming what I probably already knew.

The hardest part of the second time was they had everything all scheduled for a second surgery in July. A friend of mine dropped everything and came to my house to stay with my dogs while I was getting the surgery. The ENT called me the day before to inform me that the tumor was much larger than they thought and it was going to take a specialist to deal with this one. They already had the appointment with the plastic surgeon made for me, but it was almost 2 months September 25, 2008 , before I had surgery. I had chemo during that time, but I have no memory of much of anything from the biopsy until about November. Everyone keeps telling me that it is probably a blessing so I will go with that. I do remember that the tumor produced giant blood clots in my mouth overnight and I was in a lot of pain and very afraid. I wish that I had known about this forum then because I have very little family support.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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Posts: 5,260
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Patty, you know we are quite a pair of dipsticks here. LOL You have no post memory of a couple of months and I have no memory for 9 months prior. Man we good AIN"T we.?


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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I bet if we checked Christine out a lil further she would join our gang too as well as some of our bros and sis's. LOL


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 5,260
Not gonna say anything about Liz because she might hurt me or you or whoever she sees 1st, I wish I wasn't jokig around all of the time. But that's me.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Sep 2008
Posts: 489
Platinum Member (300+ posts)
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Joined: Sep 2008
Posts: 489
Jim - Together we lost almost a year - that is 7 years in dog years LOL

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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