| | Joined: Oct 2012 Posts: 12 Member | OP  Member
Joined: Oct 2012 Posts: 12 | Hi everyone,
My name is Michael 43 years old smoker for 20 years about 1/2 pack a day. quit drinking since 15 year ago. and no one in my family have any type of Cancer. But on July 15 2012 I was diangostic as Tongue Cancer 2nd stage. I spent alot of time try to findout what is my best treatment offer. went to USC ENT. City of Hope, Loma Linda Proton center, and Ent specialist suggested by my family Dr.
All the Dr. told me to have surgery and remove it. I try not to do it since I will lost 3/4 of my front tongue. but every Dr. told me the same, and seems like if Radiation along will not work, and will be more damage to myself then surgery.
So I had the surgery done by Dr. Kokot in USC. because he was the one with earlist date for surgery. and I kind of like the name USC...
anyway, the surgery went will, I was in ICU for 4 days, then sent home on the 7th day. at the begining my tongue was swallened very bad, can not help drewing all the time, but I was able to speek on the 1st day. not clear, but my family manage to understand me will. (I love my family)
to make the free flap the Dr. remove skin from my left wrist about 5X5 inch and the artery vain about 1 foot. and make up what they remove from my tongue ( because if I do not do that i will have problem talking and eating.) the new flap look very funny and swollen. but as the day goes by it is much smaller now.
Dr. also remove some of my left lymph node, and he did not find any bad lymph node so he stoped. my neck is still very swollen after the surgery. ( it is been 2 weeks now) and kind of deform, but it is ok.
after one week I went back to see my Dr. to see the reports, and he told me that surgery looks good, and he got everything out, with + clear margin. here is the problem:
due to the size of the tumor, he suggest radiation anyway. the Tumor is 2.5x2.5x3.5 cm. he said because it is deep, and recurring is greater so he feel safe if I take radiation treatment.
ok, I kind of not wanting the radiation treatment. and can someone give me some suggestions? and what do I need to do to monitor if my cancer return?
Thank you very much. | | | | | 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 | You can and should for yourself get another opinion but I would imagine you are going to hear the same recommendation as your cancer ( HPV- SCC) has a nasty habit of recurring.
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 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 | Welcome to OCF! Go to a major cancer center for a second opinion. You dont want to play games with this. Get it the first time and leave no doubt about it returning.
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: Oct 2012 Posts: 12 Member | | OP Member
Joined: Oct 2012 Posts: 12 | Thank you. I am trying to get as much information as I can. My family Dr. also told me the same about getting everything at the first time. and make sure it wont comes back.
| | | | | Joined: Oct 2012 Posts: 12 Member | | OP Member
Joined: Oct 2012 Posts: 12 | PS. my cancer is not HPV. do not know why but just got Oral Cancer. HPV normaly would be at tongue based. and react will with radiation, my was front tongue on the left 1/2 and reach to the mid tongue. Dr already confirm that he remove everything with nice clear margin. but he said that deep tumor have greater chance of return. I will meet with my Oncolagy on Monday, and will ask more detail on how he would target my radiation treatment. | | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2006 Posts: 756 Likes: 1 | Welcome to OCF, and sorry you are here. So far you've received great advice. A second opinion and most likely radiation. You don't want to join the "recurrence club", so hit it hard now. We are here to help you get through this, so ask questions and keep posting.
Susan
SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
| | | | | Joined: Oct 2012 Posts: 12 Member | | OP Member
Joined: Oct 2012 Posts: 12 | | | | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2008 Posts: 711 | I just want to add my welcome. Your story is very similar to many on this forum so along with all the great advice you've already received, I'm sure you will have no problem getting answers to any questions. Stay strong.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer.
And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer.
May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | | Joined: Oct 2012 Posts: 12 Member | | OP Member
Joined: Oct 2012 Posts: 12 | | | | | | Joined: Sep 2012 Posts: 35 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2012 Posts: 35 | Welcome, Abo,
I have not started treatments yet, so as of now, the best advice I can give is to spend time reading as many of the posts on here that you can, even if it takes a few days to do it. You will learn so much, and as others have said, knowledge is power. You will also learn very quickly that you are not alone, and you will be able to take advantage of others experience and knowledge. To use only a few cliche's, Follow your gut, question authority, and take it one day at a time.
Stage 4: Mid-line BOT primary; Left Lymph Node 4-5cm HPV+
Chemo/Rad 10/08/12; 3 big doses cisplatin
Updated 10/16 refusing Cisplatin; due to side effects
Considering Carboplatin; discussing with doctors.
Corp. Trainer- South New Jersey
Life is What Happens When You're Busy Making Other Plans.
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