#88251 01-17-2009 05:35 AM | Joined: Jan 2009 Posts: 2 Member | OP  Member
Joined: Jan 2009 Posts: 2 | Hi
So glad I found this site, my brother who is 45 has just been diagnosed with SCC of the tonsil - don't know stage yet, all still realing a bit yet.
They have said that he will need chemo and radio therapy but that surgery is the last option. He has to go on Monday to meet his team
Already picked up several useful things for him from your forum so thanks I am sure I will have lots of questions next week, if thats' ok.
Shaz
Shaz - 15.1.09 My big brother - 45 non smoker dx scc right tonsil
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Welcome to the home away from home. Just ask away and I'm sure some one in the forums will answer your questions whatever they are. There are a lot of knowledgeable people in here. Sorry about your brothers diagnosis but he will beat this good old OC. Have a great day and I hope your weather is warmer than our -7 this morning.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
| | | | | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Shaz, Hang on the first week or two can be a roller coaster. with all the new information flying at you (and your brother). This forum has a lot of information for you.
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Welcome to the site. I would encourage both you and your brother to keep reading. There are many here who have dealt with tonsil cancer and lots of us who have been through radiation and chemo.
Keep posting - we look forward to hearing more.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Mar 2006 Posts: 114 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Mar 2006 Posts: 114 | Shaz welcome. As Mark said, you're going to have a lot of information coming your way. Over and over again in the beginning stages of my Dx I found this site to be the one place where I could make sense of everything I was being told. I could come here and find that the direction they were having me go was pretty standard for my Dx and many others had been down the same road. It can really help put your mind at ease.
-Steve
Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
| | | | | 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 | Shaz, welcome to OCF. You will find lots of help and support to assist your brother with his OC. When you are able, please help us to help you by adding some info to your signature. Its located in your profile.
Since your brother is due to start his treatments soon, one thing he may want to do now is eat like crazy. Once the treatments start, his taste and eating will change and become a challenge. Feel free to ask lots of questions. Dont forget to take a notepad on Monday to write things down.
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 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Welcome Shaz and good luck to your brother. You will find everyone here to be very helpful and supportive.
As Christine advised, take a notebook and write things down at the appointments and write down questions for the doctors when you think of them. I have found that when I open my notebook at my appointments the doctors slow down, quite often sit down, and take the time to talk with me instead of at me.
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: Mar 2002 Posts: 20 Member | | Member
Joined: Mar 2002 Posts: 20 | Shaz,
My mom was diagnosed more than 6 years ago and had radiation alone. She is now in the hospital for a 2 time infection related to a back surgery last July. But this non-healing is a result of poor nutrition, due to the side effects and changes related to her radiation. I am now kicking myself for not reading more and learning more- so I encourage you to spend lots of time on this site and also SPOHNC site because you need to know a lot- for now and in the future! So get to it and good luck! My prayers are with you and your family. | | | | | 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 | There are many many survivors here with a tremendous amount of info to pass on so ask away.
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: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Hi this takes me back to the day I was dx with oral cancer. I was worried of other types of cancer but when I went to the oral surgeon and he said the words I can remember like most here I bet the sinking and terrifying feeling in the pit of my stomach. I can remember then my nurse practicioner directing me to this site. I remember my first contact here and what a difference being involved with this site has made for my journey. What a wealth of knowledge, support and caring. Shaz the people here make you feel so welcome. I have vented rejoiced and cried with many. I have made new friends and extended my family. You and your brother are privy to a group of individual who strive to help with information and lift your spirits. They do not just talk out the side of their mouths they have walked the walk and sometimes done the walk more than once.
Take care and remember like most of us it is one step at a time!!
Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
| | |
| Forums23 Topics18,253 Posts197,151 Members13,340 | | Most Online1,788
Jan 23rd, 2025 | | |
|
