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#192332 05-03-2016 06:44 AM
Joined: May 2016
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Hello everyone. I am a 36 year old female that received a diagnosis of oral cancer. Yesterday. I had an abnormality found 9 years ago and have had 3 prior biopsy's that came back a severe epithelial dysplasia. Well, this one (4th growth in 9 years) came back as cancer. I am waiting a call from the doctor's office for when I will be scheduled for surgery to remove a portion of my tongue. While in surgery, they will determine the exact stage and the find out if a neck dissection, chemo, or radiation is needed. Interestingly enough, I work in healthcare and help patients with head and neck cancers. So, I'm really digesting this as a caregiver right now and not as a patient. I'm happy to find this site and look forward to the support that it can give me as I continue on this journey.


Cyndi
non-smoker, no risk factors, social drinker, no HPV
dx 5/2016 - no specifics yet
4 prior abnormalities removed starting in 2014
healthcare provider as well
CR33 #192334 05-03-2016 07:56 AM
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Wow, I guess you must have a fairly advanced understanding of what could be potentially coming your way, compared to most of us who've been down this road before you. All I can say, is good luck with that staging diagnosis. Hopefully those TNM numbers are as close to 0 as possible, especially the N & M.


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
CR33 #192335 05-03-2016 11:26 AM
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Welcome to OCF, Cyndi! Im so sorry you are here as a patient. This must be especially difficult for you being that you work in the H&N cancer field already. What type of job do you do?

Dysplasia commonly returns when its removed. It doesnt always become cancerous. Im very sorry yours has! You are young so hopefully you will be better able to bounce back quickly after your treatments.

If you havent already obtained a second opinion, I would advise you to get one. If you are able to go to a Comprehensive Cancer Center (CCC) for the 2nd opinion, even better. At a CCC, a team based approach will be used to determine the best individual treatment plan after all the tests are done. Isnt staging done after a PET or CT scan to help determine how big the tumor is and if it has spread to any other areas? Surgeons will advise the patient to have surgery, once tissue has been removed it cant get put back. This is another reason why a second opinion is so important.

Best wishes with 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
CR33 #192337 05-03-2016 06:38 PM
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
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Hi Cyndi, I am sorry that you need to be here. Having said that, this is a wonderful place to come for support and advice.
I too was a bit peturbed to read that staging will be done during surgery. Staging should always be done prior to any treatment being offered and includes scans - CTs/MRIs/PETs. Please check on this. I also highly recommend a 2nd opinion as Christine says, at a CCC. It is so important to get this right, from the start.
I wish you well and hope your staging is a good one. No N . No M.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
CR33 #192339 05-04-2016 03:48 PM
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Hi Cyndi, welcome to the circle of friends. While you waiting for a treatment plan, it may help you pass the time by eating all your favorite foods now. There will be a period of time when you won't be able to taste or eat much. There's also the possibility of taste changes post treatment. Indulge yourself now.


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.

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