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Joined: Jul 2017
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Joined: Jul 2017
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Hello, my name is Karen and I live in Columbus, GA. 3 years ago I had a spot on my tongue that concerned my dentist. I went to an oral surgeon to have it biopsied and it came back as benign so great news. A few months ago the spot came back in the same place, the back left side of my tongue. I was again sent to an oral surgeon who biopsied it and it came back as squamous cell carcinoma. I was shocked since it was nothing last time. I am 48, use no tobacco products and am very healthy. Also HPV negative. I was referred to an ENT who said it would need to be removed. He ordered a CT scan with contrast to make sure it wasn't in my lymph nodes, thankfully it hadn't spread. Surgery to remove that part of my tongue is scheduled for July 25th. I am ready to get it over with, but not looking forward to the surgery and recovery. I own my own business (pet sitting company) so I can do most of my work from home and can answer customers/employees through email and text. My surgeon's step mother had the same surgery in February and I got to have a nice conversation with her about her experience, made me understand things better. She suggested I visit this forum for more help and information.



SCC - diagnosed July 6, 217
Partial Glossectomy scheduled for July 25, 2017
HPV negative, 48 y/o, non smoker, social drinker


Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Karen! Im glad you found our site to help you with info and support. You are not alone in being a healthy adult with no risk factors (tobacco, HPV-) to be diagnosed with SCC OC. There are approximately 7% of patients who have no known cause. Regardless of why it turned into cancer, you will go thru the same things as others who know what caused theirs went thru. Dont worry, we'll be here to lean on to get your thru everything.



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: Sep 2016
Posts: 111
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Joined: Sep 2016
Posts: 111
Hey Karen,

Welcome from another 7% group member. I've been told that the social drinking and no tobacco usage actually helps in the battle. (Maybe / maybe not Either way here we are.)

It's a little hard to hear the diagnosis at first but it sounds like your team has caught it early enough to reduce the overall damage to surrounding tissue and organs.

Just as a coincidence July 25th 2014 was my most recent surgery, so we have something in common.

In general you will be getting a great deal of information from your oncologist and others. Get ahead of the curve and do some preliminary research into the anatomy of your head and neck. Just find out how the different system interact and their locations.

Ask questions if you are unsure about what you're being told. Take notes. Keep a log of which doctor you've seen and summarize the conversation / directions.

Since you're a small business owner, you will have to develop a contingency plan for the days you will be recovering from surgery and possibly radiation treatments as well.

You have a few days to get your insurance in order and to try to get a support system together to help you get through

Good Luck - and keep us updated on your progress



1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

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Welcome to the forum although I'm sorry you have to join our group of friends.

Bjmpittsburgh has given you really good advice. At this point, I have nothing to add except to say do let us know how you're getting on.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Joined: Jul 2017
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Joined: Jul 2017
Posts: 2
Thank you everyone, I have a GREAT support system between, family, friends and employees to help me get through this....and now I know I have all of you!


SCC - diagnosed July 6, 217
Partial Glossectomy scheduled for July 25, 2017
HPV negative, 48 y/o, non smoker, social drinker



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