| | Joined: Jul 2012 Posts: 28 Contributing Member (25+ posts) | OP  Contributing Member (25+ posts)
Joined: Jul 2012 Posts: 28 | Hello, new hear. I am having a biopsy and mapping done this coming friday on the base of my tongue. Two ENT's have told me they believe it is cancer. We just don't know what type or what stage. I have a one week old baby at home. I'm terrified.
I've had horrible ear pain since April. They've tried Hydro and Oxy codone. Nothing last. The hydro will take the edge off for a couple hours and the oxy does nothing.
Any advice or oppinions on UAB would be greatly apprecited.
Thanks
Josh
Age 35, Former smoker/drinker HPV+
Ear Ache 5/12
GP for ear ache 6/18
ENT for ear ache 7/12
CT shows cancer 7/12
Biopsy 8/12
diagnosed SCC
Base of tongue right side
Barely crossed midline
Nodes involved
PEG 9/12
35 IMRT start Sept 6th
Cisplastin x3 1 down 2 to go
| | | | | Joined: Sep 2009 Posts: 177 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 177 | Hi Josh, Welcome to our family and sorry you had to come. There are many here that have had your type of cancer and are full of information. Keep coming back here it is really a life saver. I will keep you in my thoughts and prayers
Wendy
Wendy
46yrs@ DX 9/16/09 T1N0 SCC of leftlat tongue, poorly differentiated.Partial glosectomy 10/01/09 & 10/16/09 & 11/10/09 60-70% tongue removed, Radical fff, 38 nodes-clear, no rads/chemo. 3 petscans-clear
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Hi Josh!
Welcome to OCF, glad you found us brotha, sorry you had to!
The UAB Birmingham Medical Center is a Comprehensive Cancer Center and is the #1 ranked hospital in Alabama according to the US News and World Report Annual rankings. It's rated high in cancer care and Ear Nose and Throat, while not nationally ranked it's a good facility that should be up on the current protocols of treatment. It should be a good choice for you to get your medical treatment done when and if the cancer is verified.
I too had young children at home (ages 4 and 7 at the time of diagnosis) and can relate to where you are my friend...just take it one step at a time and only deal with what's in front of you, it's when we let our minds wander that we can get overwhelmed and that does nobody any good...so breath. Right now let's try and get the pain under control, work closely with your medical professionals on this. Take this time to eat the foods you love, as much as you want, and spend precious time with your family before the madness starts with treatment..."if" it's cancer which only a biopsy and pathology report will be able to confirm.
Plug into these forums often, we are here for advice and support and we are badass at it so don't hesitate to reach out Josh.
Keep your chin up, breath.
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jul 2012 Posts: 28 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2012 Posts: 28 | I'm ready as can be. I have been visiting this forum for three weeks now and have found it the most useful resource on this cancer anywhere. I forbid my wife to do any research until after the baby was born last week, then I gave her a printout of Getting Through It Together and referred her to this site.
Thanks so much for the encouragment and thoughts. I read a quote on here recently and it has stuck with me and kept me upbeat as I would like to consider myself a "tuff ole country boy". The quote was to put your big boy britches on and get ready to fight like hell.
I'm glad I found this site now instead of later.
Age 35, Former smoker/drinker HPV+
Ear Ache 5/12
GP for ear ache 6/18
ENT for ear ache 7/12
CT shows cancer 7/12
Biopsy 8/12
diagnosed SCC
Base of tongue right side
Barely crossed midline
Nodes involved
PEG 9/12
35 IMRT start Sept 6th
Cisplastin x3 1 down 2 to go
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | It sounds a lot like its HPV related - a lot of BOT cancer is if so its very treatable - hugs - you'll get through it!
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
| | | | | 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 | Do you have any swollen lumps in your neck?
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: Jul 2012 Posts: 28 Contributing Member (25+ posts) | | OP Contributing Member (25+ posts)
Joined: Jul 2012 Posts: 28 | Yes, I have a large lump under my right jaw line.Not visible but you can feel it if you place a finger on my neck. The doctor is aware of it. Also just last week I noticed a lump on the left side under my ear. I haven't been tested for HPV but I'm sure thats what the doctor was speaking of when he said he was looking for certain tags out of the biopsy. Is there a quick explanation why the HPV+ is more receptive to treatment?
Age 35, Former smoker/drinker HPV+
Ear Ache 5/12
GP for ear ache 6/18
ENT for ear ache 7/12
CT shows cancer 7/12
Biopsy 8/12
diagnosed SCC
Base of tongue right side
Barely crossed midline
Nodes involved
PEG 9/12
35 IMRT start Sept 6th
Cisplastin x3 1 down 2 to go
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Josh, welcome to OCF! Congrats on the new baby!!!! Only thru the biopsy will they doctors be certain if you have cancer. I hope it comes back negative!!!! For now, Im sure the baby keeps you plenty busy. Try to do positive things that will keep your mind off the "what if's". Reading or any activity that makes you concentrate will work. There are so many unknowns yet about HPV. No matter if you are HPV+ or not, you will still be treated the same way. They can check your biopsy sample for being HPV+. I would ask if I were you just so you know. Also HPV+ patients have less of a chance for recurrence so thats another good thing about it. Keep up that positive attitude, it really does help you to get thru the rough times easier. Best wishes next week!!!!
ChristineSCC 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  | | | | | 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 | Well IF your BOT primary biopsy confirms SCC then ask that those cancer cells be tested for HPV. IF you have SCC with a BOT primary then tests have indicated that you have a 70+% chance that the cancer is HPV+ and IF you have SCC and IF it's HPV+ then you have less chance that the cancer will come back post Tx and therefore you have a greater 5 year survival rate. First things first, lets see what the results of the biopsy are.
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: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2006 Posts: 720 Likes: 1 | UAB is also a member of the National Comprehensive Cancer Network, an alliance of 21 top U.S. cancer centers that together develop the cancer treatment protocols that are updated annually. The husband of dcferree, a relatively new member of OCF, is being treated there -- perhaps you could get in touch with her with any questions.
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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