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#173405 11-01-2013 09:22 PM
Joined: Nov 2013
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Babak41 Offline OP
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Hi guys, i am new to this and very scared. I found a painful spot on my tongue and was confirmed to be the C. Can you help me understand how deep i am in trouble? Tonight i found a dot size beside the original spot, does that mean it is spreading to every where in my mouth. Any info helps

Last edited by ChristineB; 11-02-2013 06:24 AM.

42 years old, Professional Hvac technician, long time smoker, but have quit now, occasionally having couple of puffs.
09/13 diagnosed oral cancer (tongue)
Waiting for the cscan and treatment options
Joined: Jul 2007
Posts: 939
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Babak41...going to notify the moderators to move this to the correct forum so people will see it and respond.

Last edited by ChristineB; 11-02-2013 06:24 AM.

Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
Joined: Sep 2006
Posts: 8,311
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What is the diagnosis you were given?

Were will you be treated?

What Tx are they suggesting?


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 2007
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Welcome to OCF! (Thanks Deb!)

Right now its important to stay calm educate yourself so you can be your own advocate and get the best possible care. I suggest reading as much as you can both here and on the main OCF pages. Learn about oral cancer and everything that goes along with it.

You are just beginning on the long road when first diagnosed. Its best to go to a comprehensive cancer center (CCC). They will use a team based approach where all the specialists work together on your individual case and are on the same page. At the very least get a second opinion as surgeons always recommend surgery and radiation docs always say you need rads, etc.

Please take some time to review the info I sent you thru a private message (PM). Its important to easily learn how to navigate the forum and add a signature. Its something we need in order to help you easier.

About the added spots on your tongue, it could be anything besides cancer. Maybe thrush or even an infection. We are not medical professionals, but even medical professionals would never be able to diagnose anyone over the internet. Try to stay busy and think positive. We will help you get thru the upcoming months and prepare you for your battle. Its up to you to make good choices and focus on what is in your control (your intake and attitude). Im a firm believer that a positive attitude helps patients get thru their struggles easier.

What you can start on is paying attention to your intake. Eat all your favorites and try to bulk up a little. Pay attention to calories and how much water you take in. Every single day for at least the next year you will need a minimum of 2500+ calories and 48 oz of water (some will say more). This is not optional! You cant skimp one day and try to make it up the next, that next day never happens and it becomes a habit leading to malnutrition and hospitalization if you dont change your intake. This is the keep to getting thru everything easier and it is up to you and within your control.

Hang in there, you really will be ok and get thru this. We are in your corner smile



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
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Posts: 3,267
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Welcome. Sorry you had to join this group with a recent diagnosis of cancer. If you can tell us a litter more about your diagnosis others may be able to help you, and if you have any questions, just ask. Good luck.


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






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Posts: 596
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Hello, Babak41.

I'm sorry that you've recently had a diagnosis of tongue cancer. Hopefully, it was caught early. If you had symptoms and sought help within the first 2 weeks, that may be an indication that you caught it early, which is the best thing you could have done.

I know your world has been turned upside down right now. As Christine said, please create a signature so we can help you a lot more.

I hope the ball has begun to roll and you've been referred to a Comprehensive Cancer Center and plans are being set in motion for you. I look forward to hearing from you and you can do this!

Take care and best wishes!

Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Joined: Sep 2013
Posts: 94
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Posts: 94
Welcome, and very sorry to hear about the diagnosis. You have come to the best place for this type of thing on the internet.

If you give us a bit more info, as previous posters have stated, we might be able to give you some more answers. For example, what type of cancer, is it confirmed to be SCC? HPV positive or negative?


36, female, left tonsil HPV+ SCC, T2N1
8/28/13 SCC in left tonsil
9/12/13 surgery:TORS and selective neck dissection (levels II-IV), 23 nodes removed
9/18/13 post surgery biopsy: 2mm clear margins, a 7mm lymph node positive in level IV, no ECL
10/28/13 rad begins, 30 treatments, tomotherapy
12/09/13 radiation ends!
2/10/14 papillary thyroid cancer
2/26/14 PET shows clear neck other than thyroid cancer, but with high uptake in an ovarian cyst
2/27/14 thyroidectomy
3/5/14 pelvic ultrasound



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Hi Babak:
Well, you've come to the right place for answers. And you've just become a member of a new family because that's what this group is, and a very supportive one at that.

I'm sure you are scared, we all were too when first given the news that a demon had entered our lives. But, you took the right first step by seeking out this group. There is a ton of important information "within these walls", and it will be shared with you by all.

When you're down or scared, that's the time to speak up, even if it's in the middle of the night; I've been on the forum many a night at 2am trying to help someone get past a bad night or letting someone else help me get past mine.

We've all been where you are right now, and come out the other end. Our job is to get you past the fear of the unknown. None of us were born knowing what cancer is all about, we have to learn about it at the worst possible time; you have a lot of friends here willing to help.

So, get yourself a signature created by going to My Stuff and Edit Preferences and start typing. Read some signatures of other people to see what to include.

Welcome to the family, you now have a lot of really nice relatives.

take care
Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Nov 2013
Posts: 7
Babak41 Offline OP
"OCF Canuck"
Member
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Joined: Nov 2013
Posts: 7
Thanks everyone for the replies, i did not expect so many responses. I am going to have the scan results on monday. I guess that will clear a lot the confusion i feel right now. I am self employec so not being able to work for a long period is my nightmare after the sickness itself. Looks like this site is the best way of communication with other patients.
Thanks again every one and if you can write a little please help me by writing about radiation therapy as I will start that very soon.


42 years old, Professional Hvac technician, long time smoker, but have quit now, occasionally having couple of puffs.
09/13 diagnosed oral cancer (tongue)
Waiting for the cscan and treatment options
Joined: Oct 2013
Posts: 559
Likes: 1
"Above & Beyond" Member (500+ posts)
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Joined: Oct 2013
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Hi Babak:
Well I can see you are up at 2:30 am just like me. My sleep schedule was weird before I got cancer, now it's just plain bizarre, no telling when I'm going to be up.

I wish your cancer diagnosis was the same as mine because I could then describe my treatment plan and it would be similar to yours. But, mine is tonsilar cancer and I think that probably differs in treatment from tongue cancer. So, all I'll say is hang in there, others will chime in later with a more accurate opinion.

Now, try to go get some sleep ... and I will too.

Tony


Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

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