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Joined: May 2011
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debh Offline OP
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I've been wandering around this forum for a few days. I found it after googling oral cancer recovery because I had gotten impatient with my rate of recovery since partial glossectomy on March 25, 2011. After reading what so many of you have and are going through, I will stop my whining and count my blessings. I was fortunate to discover my cancer myself last November -- a white patch on the underside of my tongue on the right side. My dentist checked it out at my 6 month check up in January and recommended biopsy. The oral surgeon I was referred to for the biopsy said it was likely nothing and that we could watch it for a while. I insisted on the biopsy, which of course came back positive for SCC. Surgery was done by Dr. Robert Ord at UMMC in Baltimore. No radiation, no chemo needed -- just follow up at regular intervals for the next three years. My only issues now are numbness and lack of taste on the right side of my tongue and slurring some words, which I hope will get better with time. All in all, I feel fortunate!


Debbie
SCC Right dorsal tongue, T1/N0/M0
Dx 2/20/2011, age 56, non-smoker, casual drinker, HPV-
Partial glossectomy 3/25/2011
Joined: Jun 2007
Posts: 5,260
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I would agree witth you that you are indeed fortunate. But you were the observant one not the Dr. I too almost had to kiss rear to get someone to listen to me and do a biopsy. I have lived the past 4 yrs with after affects and wonder what I would be like had they listened. Good job marks for you and I pray you will be fine soon. With no rads or chemo, maybe you will return to normal soon. I have to spell my last name because I in no way say it anymore. I even hate to talk as it makes pain come running. But I am still alive.


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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Debbie,

Welcome to OCF. It sounds like you were proactive and had a GOOD dentist!

We are both fortunate in that our tumors were small, had not spread and were caught early. I also noticed a "spot" in my mouth, showed it to my dentist at my 6-month cleaning, and he sent me to an oral surgeon that same day for an excisional biopsy. I have not needed any additional treatment. "Watchful Waiting" is mentally hard, but compared to the suffering experienced by those who do not have this option, I am glad I made this choice. Only time will tell, but that is true about everything in life!

I did get a second opinion from JHU in Baltimore, which reinforced my decision. I will gladly give you more information about my JHU ENT if you send me a PM.

GREAT JOB on your signature, BTW! grin


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
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Deb, welcome to OCF! You did a very good job of being an involved patient and insisting on that biopsy. I know we all get frustrated at our rates of recovery. It takes a while to bounce back no matter what type of treatment we received. Best wishes for a fast recovery.

Catherine is right, excellent signature!


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
Joined: May 2011
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debh Offline OP
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Thanks for the compliments on the signature -- I catch on quickly. The list of abbreviations in the forum helped tremendously, too!

Jim -- I was more fortunate than anything else. The spot on my tongue hurt and by the time I saw the oral surgeon I was so terrified by everything I'd seen on the internet there was NO WAY I was going without a biopsy! Your upbeat attitude despite everything you've been through is inspirational.

Catherine -- Yes, kudos to my dentist. I've been his patient for 25 years so we are more buddies now. When I pointed out the spot, his face went white and I had one of those "Oh, sh*t" moments. All of the docs/dentists and medical staff I've seen so far have been wonderful!


Debbie
SCC Right dorsal tongue, T1/N0/M0
Dx 2/20/2011, age 56, non-smoker, casual drinker, HPV-
Partial glossectomy 3/25/2011
Joined: Dec 2010
Posts: 62
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Hi Debbie,

I'm about a month ahead of you on recovery from a very similar situation, even the same side! I figure a little numbness and slight speech impedement is small price to pay for catching it early.

Best of luck!

watchfully waiting...


Catherine, SCC floor of mouth DX 2010,unclear margins, PET scan clear, no chemo or rad,biopsy in 9/2010, 2nd excision 10/2010 didn't get all carcinoma in situ; partial gloss & excis. right floor 2/2/2011 margins clear. Part.gloss-10/5/2011 sev dys clean marg. HPV neg. Don't smoke or drink. SCC floor of mouth left side 4/2016. Dysp excis. rt palate 7/2017 Part gloss sev dys lat marg 2/2019 Part gloss free flap rt neck disc 5/2020 Part gloss bilat neck disc 7/2020 33 rad 3 cis.
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debh Offline OP
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Catherine,

I agree completely! Thanks!


Debbie
SCC Right dorsal tongue, T1/N0/M0
Dx 2/20/2011, age 56, non-smoker, casual drinker, HPV-
Partial glossectomy 3/25/2011
Joined: Apr 2005
Posts: 2,219
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Hi Debbie,

As you can see from my signature, I had a partial glossectomy with a modified neck dissection. With 6 years plus under my belt, my taste has come back my speech is normal and my tongue is not numb. I am still numb in my neck from the dissection. Most days I don't even notice it and I consider myself lucky that that's all I have wrong.

You should see improvement over time.

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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