#90688 02-25-2009 12:15 PM | Joined: Feb 2009 Posts: 21 Member | OP  Member
Joined: Feb 2009 Posts: 21 | Hi all - mainly just want to introduce myself. I am Angie, I have two little boys under 5 and a wonderful husband, Joe (30 yrs old), with no history of drinking, smoking or chewing, or HPV. Joe's cancer history is as follows: In July 2006, he had a small sore on the right side of his tongue which turned out to be SCC. At that time, pet/ct showed nothing in regional lymph nodes or chest. They removed the small spot surgically, and that has actually remained clear. In Fall 2007, he noticed a slightly enlarged lymph node on the right side of his neck - it was removed, tested positive for cancer, and they did a radical neck on the right side. 8 nodes were positive. This was followed by Cisplatin and RT to both sides of the neck and mouth -- 2nd opinion from Johns Hopkins suggested same treatment. Finished treatment in April 2008. All scans clear until all of a sudden, in November, a huge golf ball-sized tumor grew within a matter of weeks on the left side of his neck. Biopsy positive for cancer. Too big to remove (about 6mm), so carbo/taxol/ Erbitux and rt to that side of the neck, which will be followed by surgery - sounds like another radical neck. We are about 3 weeks into treatment. Tumor has shrunk by more than half. I've been a lurker for a while - thought it was about time to say hi! One question - all of the info I've been given by our docs is pretty dumbed down. And although I search on the internet, there is tons of stuff out there and it is hard to sift through. For information like statistics and everything, is there one source/website you rely on? I know we can get wrapped up in statistics but I would at least like to know the stuff I am looking at is from a reputable source. Many thanks!! | | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi ange
the best source you will find is right here.there are two search engines,and all you need are keywords to find the info you need.The main one is at the top of this page,and the second one is at the very bottom of the page.
good hunting
love liz
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | 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 | Hi Angie, welcome to OCF. There are many webiste out there with tons of statistics available. You could read for weeks straight. The most comprehensive collection of oral cancer information is right here. The main pages of OCF are loaded with the statistics you are looking for. Here is the more personal side of it, where you can chat with others about your concerns and get support.
Wishing you and your husband the best with this.
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 | What particular stat are you looking for? I personally don't think you will find any regarding your H's factual pattern.
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: Feb 2009 Posts: 21 Member | | OP Member
Joined: Feb 2009 Posts: 21 | Thank you all. The doctors seem so positive but the fact pattern just doesn't look good to me. I will get more involved with this site - I think I personally have hit a little bit of an emotional low and I know I need support. I worry about him now, but I also worry about the future with my two little boys. Too much to think about!! So thank you all - just a day here has made me feel like I have more of an outlet.
CG to H, Joe, 30 yrs old. 7/06-stage I SCC removed from tongue. 1/08-radical neck rt side, 8 positive nodes, imrt/cisplatin 6 wks. 1/09-6cm pos node on left neck. IMRT and carbo/taxol/erbitux 6 wks, surgery in April. 7/09-recurrence left neck. Erbitux, taxotere, 2nd opinion scheduled at MDA...
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Angie
So glad that you joined this group. You will find a lot of love and support here along with some very good information and opinions. I am sorry for the reason that you are here though.
Patty
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Feb 2009 Posts: 21 Member | | OP Member
Joined: Feb 2009 Posts: 21 | Rereading my post - his tumor in his neck was 6 cm, not mm. I only wish.
CG to H, Joe, 30 yrs old. 7/06-stage I SCC removed from tongue. 1/08-radical neck rt side, 8 positive nodes, imrt/cisplatin 6 wks. 1/09-6cm pos node on left neck. IMRT and carbo/taxol/erbitux 6 wks, surgery in April. 7/09-recurrence left neck. Erbitux, taxotere, 2nd opinion scheduled at MDA...
| | | | | Joined: Feb 2007 Posts: 790 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Feb 2007 Posts: 790 | Hi Angela- We are here for you. So sorry you are dealing with this.
I am praying that Joe beats this once and for all.
KATE
Tongue Cancer T2 N0 M0 /
Total Glossectomy Due to Location of Tumor
Finished all treatments May 25 2007
Surviving!!!
| | | | | Joined: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Angie,
I'm sorry to hear about your husband, I can understand why you are stressed. This site is a wonderful support, I'm glad you found it. I see you are fairly close to me, I'm in NJ. Have you gone for any other opinions? I have been to Penn in Philadelphia, Fox Chase Cancer Center and I'm going to Sloan Kettering in April. It sounds good that the tumor has shrunk by half...I'm happy to hear that!!! I will be thinking of you and please keep posted!!
Suzanne...xo
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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