| | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) |  Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Angelina,
This really stinks but you have your head on straight. You need to buckle down and find someone who will help you. You MUST be your own advocate. We are here to support you, I know it's hard and time consuming. You can do it and don't forget to lean on us for support.
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: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Finally, my ENT's office called me and they are going to do the biopsy next week. It will wither be MOnday or Thursday. I am going in Monday and if we decide to do the needle bipsy it will happen then. If we decide to cut the whole thing out it will happen Thursday or Friday. His nurse called me this morning and said "he says instead of fooling with this lets just do the biopsy" It took me calling again saying I had ear pain. Anyway, I started crying when she called. I told her I did not care how or what he did I just want some answers. Look like I am going to get them. Thanks all for your posts and encouragement.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Good for you for pushing him to do what is the right thing.
Good luck.
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 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I now know it is not TMJ, I was actually hoping it was. We will find out next week.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Good Luck Angelia! I'll be thinking of you!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | You know we are all here for you:) I'll be thinking of you and waiting to hear how it goes.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | You deserve to know what is going on Angelia. I hope and pray that it isbn't OC but just another reaction. Got ya in the prayers lady . LOL Want me to teach your students???I even played smokey the Bear one time for younguns at school. LOL Good luck. jim
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
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Come on over. They would love you.
In all seriousness, I am scared to death. Everytime my throat starts hurting or my neck or my ear, I just get petrified that this junk is back. I do not know how to handle all of this. I am not good at dealing with the unknown. I can only hide my fear from people for so long and pretend that I am okay. When in reality I am so not okay.(bad grammar, owell, I am a math teacher anyway and special ed one at that) I love my job and can stand that thought that I may have to be gone for awhile because of some stupid cancer crap. I used to never cus, but i have been cussing like you wouldn't believe the last few weeks. I think it a way to get rid of some the crap that I am feeling right now. Anyway, thanks for letting me vent all this. I really do not know how you all stay so strong. I just want my life back, I hate this "new normal."
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 229 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Sep 2009 Posts: 229 | Big, big hugs headed your way!
Patty
08-10-09 Partial Glossectomy w/suprahyoid neck dissection
SCC T1NOMX Stage I | 46 years old
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Angelia, you can bet that all of us mouthy brave ones are just as afrais you are. Some just like to hide it to maybe boost others. Yes, I bet most of us cuss at this OC too as it is a self defense method that is inborn. What you teach is my favorite school subject. Math for some reason came easy to me. I had a math teacher in High School that offered to pay my way thru college if I would be a mathematician. He and his wife had no kids. I even got the job of making the math tests for the class and grading them, LOL I felt bad for that couple as they were great people. Have a great day Angelia and remember, we all get mad at this disease and let the words fly.
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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