| | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) |  Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Hi Robin Marie and Welcome. You've come to a good place. Whatever happens, this site is a great place to ask questions and get information that the doctors, however good they are, don't always have, since most never went through what we have gone or are going through. Good luck with the next stages. Please stay in touch. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Jun 2013 Posts: 23 Member | | OP Member
Joined: Jun 2013 Posts: 23 | Thank you all. I agree in the staying away from Dr Google. Very scary stuff out there. | | | | | Joined: May 2013 Posts: 63 "OCF Kiwi Down Under" Supporting Member (50+ posts) | | "OCF Kiwi Down Under" Supporting Member (50+ posts)
Joined: May 2013 Posts: 63 | Good luck Robinmarie,
Yes the waiting is horrible, keep us posted.
39yr old female, DX BOT SCC Stage IVA (T1N2bM0) HPV+
28 May 13 - Pharangoscopy & tongue biopsy
29 May 13 - BOT Surgery & right ND (lvls 2-5)
31 May 13 - Hemorrhage, emergency trach, critical care
BOT clr mgns, 9/67 nodes & extracapsular extension
Finished chemo (cisplatin) & 30 rads
| | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Apr 2013 Posts: 319 | Hi RobinMarie, sorry to hear you're having these kinds of problems, but as others have already mentioned, if it turns out to be cancer, Florida has a number of top notch treatment options. I'm in the Pensacola area (far western panhandle) and am treated at "The Woodlands," an affiliate of MD Anderson of Houston (said to be the best in the country.) I'm quite pleased with my "team" and have been so since I was diagnosed in '09.
Someone else will tell you that you are you own best advocate, and I have to emphasize this. Make notes of the advice you are given here, and then use these to ask your MO (medical Oncologist) detailed questions.
It's a good idea to take another trusted individual (spouse, family member, or friend) along each time you you have a conference about your condition, to back you up; and that means have them take copious notes as well. You may miss something important otherwise.
DO NOT EXPECT anything to happen automatically. It's unfortunate, but true, that often you may leave a conference believing that your next step is being scheduled, but if you haven't been informed with the time, date and location before you leave the office, it hasn't. Check on it and don't leave without a confirming slip of somekind in your hand.
Push. Be the person you hate if that's what it takes, but push for progress all through the process. They are human, they get overwhelmed and things can fall through the cracks. Someone needs to keep on top of what's going to happen next, and that person is YOU. So never leave without asking, "What comes next - and when? If you don't get the "when" part before you have to leave, be a pest until you get an answer to that.
I sincerely hope this is superfluous advice and it turns out not to be cancer at all, but if it does not turn out that way, you know what to do.
Good luck,
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
| | | | | Joined: Jun 2013 Posts: 23 Member | | OP Member
Joined: Jun 2013 Posts: 23 | Thank you. I'm frustrated if course. My cat scan & MRI did show a spot on the base of my tongue. I've read nothing good about this. My doctor has set me up with an ENT but they can't see me until the 26th of this month. That's so far away. They said they would call me if they have a cancellation. Hopefully ill get in sooner. The glands in my throat are swollen & I have a tender spot on the back of my neck, this spot is new. I can feel the swelling in my throat.
I wish I could get an answer either way.
Robin | | | | | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | call another ent, pref at a CCC that sees patients like you 20's/day.
6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Yes do call around and try and get to see another ENT sooner. If you have swollen "glands" (perhaps nodes) then perhaps the ENT can do a FNA.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2013 Posts: 23 Member | | OP Member
Joined: Jun 2013 Posts: 23 | I got lucky!!! The ENT had a cancellation. I called today at the right time just to check. I go tomorrow at 2:00. I'm really nervous but anxious to get some answers.
Thank you all.
Robin | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 1 | Good lick with your appointment today.
10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs
| | | | | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | I so hope that luck you got RobinMarie is very GOOD luck and you have an irritated taste bud or inflammation causing node reaction. Best wishes for a very positive experience but a very negative diagnosis for cancer!
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
| | |
| Forums23 Topics18,168 Posts196,925 Members13,103 | | Most Online458
Jan 16th, 2020 | | |
|
