| | Joined: Jan 2011 Posts: 25 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 25 | Hi There,
I am new to OCF. What an amazing group. I've been reading posts for the past several weeks and I have cried, laughed, been educated and inspired by you!
Here's my story:
White patch on tongue 8 years ago - biopsy done/negative
Patch reappeared 4 years later - biopsy done/negative
Chronic ulcer after second biospy
After my second biospy I had an ulcer that never healed. My denstist referred me to an ENT who said it was nothing. I have a wonderful, persistant dentist and he was not happy with that and referred me to another doctor for a 2nd opinion. Was told nothing to worry about again. Went for a 3rd opinion at University of Michigan. Third biopsy showed severe dysplasia. Underwent lateral tongue resection ("minor glossectomy") 2 weeks ago and SCC was found at the time of surgery.
My hope is to help OCF in any way I can. I will try to educate those I know about oral cancer, participate in walks, and make my online purchases benefit this remarkable
organization.
Thanks for letting me share my story!
Yvonne
Age 35
Superficial SCC lateral tongue
HPV(-), nonsmoker
Right lateral tongue resection 1/17/11 w/ Alloderm Graft
Proud mother of 2
Enjoy walking/aerobic kickboxing
Pittsburgh Steelers Fan! (#86)
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Yvonne, welcome to OCF! Sorry that you are here but you have found a great place for info and support. Will you need any further treatments? Best wishes for a cancer free and healthy future  PS... I love your enthusiasm!!!
ChristineSCC 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 | | | | | Joined: Jan 2011 Posts: 25 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 25 | Thanks, Christine! As of now, no further treatment is warranted. My doctor is conservative and I will be having follow up visits every six weeks to monitor. It's 6 hours round trip to see him but well worth it. He is an MD who is also an oral surgeon - I feel very fortunate!
Does anyone know if there is spell check on here? I'm ashamed to admit I have become dependent on it!
Last edited by Yvonne Johnson; 01-31-2011 05:12 PM.
Age 35
Superficial SCC lateral tongue
HPV(-), nonsmoker
Right lateral tongue resection 1/17/11 w/ Alloderm Graft
Proud mother of 2
Enjoy walking/aerobic kickboxing
Pittsburgh Steelers Fan! (#86)
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Welcome to OCF Yvonne! Like Christine, I enjoy your enthusiastic tone. As far as the spellcheck goes...well you're a Steelers fan so we all understand if you can't spell....  GO PACKERS!!! Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Yvonne,
So happy to see you here:)I've enjoyed getting to know you. As far as spell check we don't have it but don't worry about it. We all make mistakes but still understand each other.
I won't hold the Steelers against you...but Baseball is another story..I'm a Phillies fan all the way!!
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Hi Yvone,
Nobody from Michigan should be a Steelers fan. But, if you like PA, try the Eagles. But, you have to be a tough person to be an Eagles fan.
Din't wury abot spel chk. No1 hear cars.
Hey Suzanne...heading to see the Phillies in Florida (at Houston) in March. Can't wait to see R2C2.
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"
| | | | | Joined: Jan 2011 Posts: 25 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jan 2011 Posts: 25 | Jerry,
Could you read my post under Medications, Treatment, Procedure Forum? I would love to have your opinion.
(Just so you know...I am a true Steelers Fan and cannot be persuaded otherwise - it keeps the marriage strong!)
Age 35
Superficial SCC lateral tongue
HPV(-), nonsmoker
Right lateral tongue resection 1/17/11 w/ Alloderm Graft
Proud mother of 2
Enjoy walking/aerobic kickboxing
Pittsburgh Steelers Fan! (#86)
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | OK, we'll drop the football talk.
I did answer your other post. Check it out. Send me a PM or an email if you want to discuss this off the forum.
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"
| | | | | Joined: May 2010 Posts: 224 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: May 2010 Posts: 224 | I am so glad they found it so soon for you. I had issues with misdiagnosis and people telling me it wasn't cancer as i was too young. I am also being treated by a MD who is a Oral Surgeon. He is actually one of the best docs in the state for oral cancer, and since the start of my visits with him till now it was 2 hours round trip, but as of this friday coming up, it will be 6-8 hours round trip to see him, and I will be seeing him every 6 weeks as well, but will be worth it, cuz he's one of the best, and I totally trust him. Glad you are doing well, hope it stays that way for you! I am not a fan of any sports team really, so no issues with me, . Do you live in michigan that you go to u of m? i go to u of m, but it's minnesota,
25/female at diagnosis
Dx;stage 3 SCC tongue 03/25/2010
Surgery 04/13/2010
Trach,ng tube, peg feeding tube
Hemiglossectomy, right side neck dissection, 40 lymph nodes removed. Free-Flap transplant to tongue.
30 rounds IMRT ended July 15,2010
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