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#132196 03-29-2011 07:03 PM
Joined: Mar 2011
Posts: 16
Gemma Offline OP
"OCF across the pond"
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"OCF across the pond"
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Joined: Mar 2011
Posts: 16
Hey, ive been reading this board for a while and decided to sign up, i am a 17yr old girl and on 17th novemeber 2010,i was diagnoses with MEC low grade i think, it was in my right gum cheek, i had one operation on 18th december 2010, had a muscle repair in my cheek too, and on feb 1st 2011 had to have another op and some of my jaw removed, and this operation was sucessfull,its healing great now and feels fine, although had a little problem with mouth opening but its getting better, the weird thing is people on this board seem to have a lot of information about what they had and specfic things, but because of my age my i think my surgeon wasnt very, upfront with me, i had to ask him what grade it was because he didnt tell me, do you thin i should get some more info on what i had and stuff, thanks in advance smile


Age 20 Gemma, Dx nov 2010 MEC ,surgery in Dec 2010 , surgery in feb 2011,clear margins , metastatic spread cervical lymph nodes may 2013, modified radical neck dissection, IMRTx30 60gy no peg
Gemma #132219 03-30-2011 07:37 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Im sorry you are a cancer patient at your young age!!! You should be treated at a cancer center. Im sure your parents are taking you to your appointments and pretty much calling the shots since you are under 18. Does your doctor talk openly with your parents? It is not unusual for patients to be informed, it is unusual for them not to be! What type of doctor is treating you? You should have a whole team of doctors not just one or two. Have you seen a medical oncologist? The questions Im asking you are relevant to your treatment. If you are being seen at a cancer center you would have met with a team of doctors each with their own specialties. As a patient I feel it is very important to know what is going on and why the doctors order different tests. If you have a question, you need to ask and the doctor whould be answering you regardless of your age.

Please add a signature line when you have time. Its under the "my stuff' tab, then profile. Type in the box on the bottom. It helps us to respond to your questions.

Best of luck with your continued recovery.


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
ChristineB #132231 03-30-2011 12:13 PM
Joined: Jul 2009
Posts: 1,406
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jul 2009
Posts: 1,406
Gemma, I add my welcome and sorry to see you here... but you've come to the right place for information and support. Christine has summed things up perfectly. Please keep us informed and keep your spirits up! We're here to help.

David 2

Last edited by David2; 03-30-2011 12:14 PM.

David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
David2 #132271 03-30-2011 09:13 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
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HI and welcome, and I really wish you didn`t have to be here. Christine is right, being uninformed is unusual. I know you are under 18, and it is likely your parents are the ones with the information, but you should talk to them.

best of luck with everything, and glad you are healing well. take care.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Gemma #132287 03-31-2011 07:22 AM
Joined: Nov 2010
Posts: 17
"OCF across the pond"
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"OCF across the pond"
Member

Joined: Nov 2010
Posts: 17
Hi Gemma, I wouldn't get too hung up about the detail that other people know. If you feel you want to know more, then please just tell your surgeon that you you want to know more and don't let the "I'm incredibly busy" act put you off. Were you assigned a specialist nurse as a point of contact? If so he or she may be a good person to tell that you want to know more. You may need to interpret some of the comments made by our american friends where the medical system works differently to ours.
Good luck


Diagnosed Early April 2010 SCC left tongue t3n1
PEG insertion 26th April 2010
Patial glossectomy with flap from arm and left neck dissection 28th April
20 sessions of radiotherapy in June
PEG removal Today - yippee! 19th Nov

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