#83959 11-11-2008 08:45 AM | Joined: Nov 2008 Posts: 2 Member | | Member
Joined: Nov 2008 Posts: 2 | I am just being diagnosed with SCC. So far they have only done biopsies in mouth, throat and tongue looking for the primary. They did find the primary behind the tongue last wednesday and lasered. I have been in such pain that not being able to swallow that I am so scared for what is ahead..
I go back today to find out more.. Any words would help..
thank you
elle | | | | | Joined: Nov 2008 Posts: 51 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Nov 2008 Posts: 51 | It's impossible to not be at least a little frightened. You will find a lot of support here and a lot of sucess stories!!!
Good Luck!
Cg to partner, Stage IV SCC of upper left mandible, met to lymph nodes. Dx 4/1/2008. Inopperable, 3 rounds of chemo followed by 2 rounds of chemo with 33 tx of radiation. Growth started again immediatly following. She crossed over November 30, 2008.
| | | | | Joined: Sep 2008 Posts: 250 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Sep 2008 Posts: 250 | Elle,
What lies ahead is a fight for your life. Without knowing more, it's hard to say how hard that fight will be, and I sincerely hope for yours to be among the less difficult of those you will find here. You will do it though, no matter how hard it is. You will find that strength within, as we all have.
You will find help here with any and all questions, worries, and problems along the way. Please write in when you know more about your future plan of attack. We'll be here to help wherever and whenever we can.
Lani
SCC part glossectomy 3/06, recur 8/06 glossectomy, floor of mouth, part of jaw removed, RT/chemo thru 10/12/06, PET clear 7/08
"A bend in the road is not the end of the road, unless you fail to make the turn"
Passed away 12/14/08
| | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Wow it seems like so long ago yet just the other day I was sitting in your chair. I went to the oral surgeon by myself cause everybody was too busy to go. When he told me that he was sure it was cancer and was going to book a biopsy all I could say is I can't do this....It can't be...I can't do this...wow I got to the car and the tears started coming... felt so alone and despondant...Well Elle here I am today a suvivor had extensive surgery and terriefied was the word for my journey and fight...It is not going to be easy but you can do it and there will be someone with you every step of the way. The hardest part of all this is waiting and you will hear it many times the fear of the unknown. I learned to trust in my family here on the OCF site and my doctors. I did not find this site till after my biopsy and waiting for the results. I found it through my team at the hospital doing my cancer treatment. It has been such a help to me and many others. Please do not hesitate to write. You will come out of this a winner 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
| | | | | Joined: Oct 2007 Posts: 83 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2007 Posts: 83 | Don't be afraid to ask for second and third opinions...also take yourself to a cancer center if you can. They have more people that work with cancer pt's.
Lots of real good info here. Ask questions of your Dr and the folks here and try to keep yourself informed. We've all walked in your shoes or next to them so we know where you are.
Best of luck
Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
| | | | | Joined: Nov 2008 Posts: 2 Member | | Member
Joined: Nov 2008 Posts: 2 | Thank you everyone who responded to my cry for "help." | | | | | Joined: Aug 2008 Posts: 531 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2008 Posts: 531 | Direction and help is there for the asking and taking :))
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
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | We're here, Elle. We ALL remember being in your shoes! Each of us has traveled a different path, but we all have that initial terror in common.....and we're all here now, comforting each other and helping newbies. You've come to the right place for either information or just comfort. You are free to ask, or to rant, or to cry or to celebrate! We appreciate it all, and we've done it all. Keep us posted.....and stay close!
XO--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | 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 | elle,
As soon as you find out more, come back and post what they said and we will be able to give you loads of info. Until then try to relax. Also tell us a little more about yourself. See everyone's Signature Line as an example.
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: Oct 2007 Posts: 5 Member | | Member
Joined: Oct 2007 Posts: 5 | I have been diagnosed with squamous cell carcinoma on the right floor of mouth/tongue. I had surgery to remove as well as a follow-up of radiation and followin that, chemo therapy. During radiation I had a sever flare-up and had to stop the IMRT treatment. It was resumed and I concluded the treatment.
My question is if re-radiation of this same area, especially the head and neck, is possible and if so, how many times has this been done before. My understanding was that when you had radiation you cannot reradiate the same part over again? it is true?
Sofar my doctors has suggested IMRT, stereotactical radiation, proton treatment and I have difficulty deciding which would be the best, could you let me know your opinion?
Thank you for your help.
pino | | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Elle, one of the things I've learned here is that it is very important to be treated at a Comprehensive Cancer Center because they see a LOT of cancer and they have a gathering of medical experts, called a Tumor Board, who will look at YOUR case from a number of different angles as to the best treatments. Here's the List; scads of them in Calif: http://www.oralcancerfoundation.org/resources/cancer_centers.htm
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Pino,
You should start your own thread as your questions will get lost here in Elle's thread. It will be much easier for you to follow your posts and the answers that way.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | 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 | Pino,
I can not really tell what treatment you have already had?
How many Gys of radiation did you receive?
Why are you thinking you need more radiation?
Why are your doctors suggesting additional treatments?
The short answer to the re radiation question is yes some doctors are now re radiating patients so it is possible.
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.
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