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Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
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Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Shaylynn,

It never hurts to be "the squeaky wheel". It's your life and believe me you only want to be treated for this cancer once and correctly. There are many different ways to skin this cat and some go overboard in my opinion so that's why we are encouraging you to get multiple QUALIFIED opinions.


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: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
I felt the same way when I was diagnosed. I also had an "ulcer" that would not go away. I dealt with that for about a year then went to an oral surgeon. He did the biopsy and it came back as dysplasia. He sent to a surgial oncologist. I cried all that day. It was in March of 2007.My first surgery was cancer and since then I have had 3 surgeries and I still have some pain. Although the last 3 were not cancer. I agree with what the others are saying. EAT!!!! After any surgery it can be very painful. They say it's one of the worst surgeries to have. I have had four so I'm a pro. Buy Ensure and mac and cheese. And stool softner!!! When you take the pain meds you can't go and that may have been the worst part.

I am getting married this March so I know it's hard to deal with something so wonderful and something to terrible at the same time. I hope you find support here. I just joined myself.


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: Dec 2008
Posts: 1,004
Patient Advocate (1000+ posts)
Offline
Patient Advocate (1000+ posts)

Joined: Dec 2008
Posts: 1,004
I also think it's important to eat what you like. Even if your taste is not effected, the pain after surgery can be so bad that you just drink Ensure. I like the strawberry!! Brushing your teeth can be bad too. But....it usually lasts about 2 weeks then you can begin eating a bit more normally. That was my experience.



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:)
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