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Joined: May 2007
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redbus1 Offline OP
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Hi I am David and new to the site. So I guess this is how you start, by what I have read.I discovered a small lump in my neck 3 months ago. At first my GP treated it as an infection, but it did not go away and in fact got larger. The next month, he sent me to the ENT. He said it was a small cyst and we should take it out just to be safe. So we did, but when he got it out it was the size of an egg. It was hiding in my thick neck. That is when we discovered that it was SCC cancer. I had no signs before that time. They have now taking my left tonsil out and discovered that they think it was the sorce. They sent me to the denist and got all those treatments done. I am thankful that I went to a dentist before the oral surgen. The dentist examined my teeth and treated a few things and gave me the floride trays.The oral surgen took out one tooth root that the dentist, said needed to come out. But he said that if I had come to him first he would have recommended that all my teeth be removed, because of the possible compications after the rad. I would have done as he recommened because of my ignorence of this beast. So know I am scheduled to have a peg tube put in on Tuesday, get my mask refit again on Wed and start 7 weeks of rad treatment on Thur. Thankfully they are all moving fast and not giving me much time to think about this dieses. I have an appoinment with the chemo people to discuss the possiblity of doing chemo also. But right now I am going to try and avoid it because of how much more it magnifies the side effects, exspecially since my beast was caught so early. Well that is my story so far and I just want to say THANK YOU ALL for the posting for other people, because I was able to read and learn alot from people who really know what is going on. Before I was just blindly researching and it was scary. Now I know where I can go to get the information that really relates to what I am about to go thru. Once again THANK YOU ALL

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Welcome David.

This site and its wonderful members has helped me also. I had right tonsil cancer which presented with the same symptoms as yours. Now I am 4 years from end of treatment and doing well. It sounds like your dentist is doing a great job with the fluoride trays etc - it is so important to keep your teeth and mouth healthy.
Please keep us up to date on your journey - most of us have been through similar and can offer understanding.

Best wishes and love to you from Helen


RHTonsil SCC Stage IV tx completed May 03
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Mine presented similar as yours, only left side. I would seriously consider the chemo. You only want to go thru this once. No talk of a modified neck disection?


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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redbus1 Offline OP
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Thanks for your response. No so far Rob their is no talk of a neck disection. When they took the cyst out the examined around neck and at that time they did not see anything, that looked like cancer, it wasn't untill the results came back from the patholigist did they discover anything. when they took out the tonsils he also did several types of scopes to check the other area's of the neck and thanks helen for your responce will keep the site informed of my progress.

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David,

I would go for the double whammy of radiation and chemo at the same time if at all possible. It is a bit rougher on you as the patient but from all I read and heard during my Tx period it is the only way to go for maximum favorable results.

Godd luck on your upcoming journey and keep tuned to this forum/site.

Bill D.


Dx 4/27/06, SCC, BOT, Stage III/IV, Tx 5/25/06 through 7/12/06 - 33 IMRT and 4 chemo, radical right side neck dissection 9/20/06.
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David,

Catching it early as you say really isn't the whole story. They have found your primary and you already had mets to at least one node and a very large one at that. I believe you would be staged a IV and I definately would go for the concurrent chemo. Most only get one shot at killing this cancer and most believe it's better to give it all you can the first time.

Listen carefully to all your cancer docs and seek additional opinions if necessary. This is your life you are talking about and many people die each year due to this cancer. The treatments are tough because this cancer is very agressive and doesn't go away easily. Don't think you are doing yourself a favor by saving a treatment for a reoccurance because so far radiation is the only proven killer of our cancer but chemo does improve the rads ability to kill and therefore is often recommended. Be your own advocate and fight your battle with all weapons out there and improve your chance of surviving.


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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Hi David,

To give you the "other" side..............I did not have chemo, only radiation. I had XRT radiation. I had microscopic cancer in one of my lymphnodes, so my docs decided against cancer. That was four years ago and I'm still doing fine. Are you having IMRT? I do believe that most with IMRT also have chemo.
Minnie


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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Are you being treated at a comprensive cancer center? If I were you, I sure would like to have their opinion on the matter. Have you had a PET/CT scan? I would insist on that too. It will show any cancer activity that might be too small to see.


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!
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I would have to agree with David here saying that you usually only get one chance to kill this thing and throwing the whole nine yards at it seems like the only logical choice to me. I did whatever my docs told me to do and chemo was always a part of the aggressive treatment to kill it.

Welcome to our forum bud and please do not hesitate to ask any and all questions you may have my friend.

Billy


Dx Mar 07 with Base Of Tongue Stage IV. IMRT 35x with 3 doses Cysplatin ran concurrent. Tx ended May 31,07. Left and right node involved. Radical neck disection 7/18/07
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redbus1 Offline OP
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Wow you all sound like I need to rethink the cemo part. So I will talk with the cemo Dr and see how they feel. But right know my Rad Dr. says it is not critical for cemo and he says he is going after a complete cure. But I will keep an open mind till I see the other DR.

August I don't know if it is a Compresive Cancer Center, but it is in one of our major hospitals here and it is the Radiation Oncology Section. They have already done the PET scan of the neck area and another of the entire body. The only hot spots they found was behind the cyst that was removed, it did not pick up the cancer in the tonsil tonsil.

So 2 weeks later the ENT removed the tonsil as a precaution and found what they say was the sorce. At that time he said I would only get RadX on the left side, but the Radiation Oncologist says no we have to do both sides, because of the fact that it can jump to the other side, so once again precautions.

I do not know what type of radX, but I go for the PEG tube tommorrow, so I will go see the Oncolgist and ask what stage and type of radT. I dont know what IMRT is, So another reason I am on here, Thanks for everybody help.

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