Is Radiation/Chemo The Only Way

Hi,
Im pretty new to the cancer thing Recently diagnosed with tonsil cancer, tonsils went, just had 7 hours surgery on my neck, if you like scars this is the mother of all scars it goes from ear to ear with an uncut bit of 1 inch / 30 mm in the middle [probably to stop my head falling off!!]Dont know yet what my treatment will be but am expecting radiation X 5 per week and Chemo X 1 per week. I know this works best but it seems pretty brutal. Has anyone tried anything else, also interested in alt remedies for side affects. Have read of Ethyol injections for salivary glands.
I rather suspect the reason I got this was cause I spent the last 40 years with a glass in one hand and a cigarette in the other [gave up the ciggies two years ago]and generally having to good a time.
I am posative as hell, I have support from all around the globe I tell my friends I dont want sympathy I want posative energy, and its working I feel like I could fly/walk on water. I know I have just begun a new battle but there can be only one winner. I think this may get tough so any help advise would be much appreciated.To all other warriors out there, be posative other people get cured and get through the treatment. so can we . Posative energy will beat everything.

Yes, you will survive it and yes the treatment will make you mad and kick your ass. The radiation will put blisters on your tongue, you will have a hard time swallowing water for awhile, you`ll lose weight, lose energy and if like me saliva and worst of all, taste. You will also start feeling better and healing physically on your 3rd week after treatment. Then, you will start trying different foods and rejecting 90%, but eating 10%. You will start to do normal things. You will be told you are now cancer free and will be watched closely for 2 years. You will change in many ways, but you`ll be alive and you will learn to live with your new handicaps. Many have survived and you will also. Anytime, you have any questions please ask...Many people here will be glad to help because we also get something out of helping. Ron

 

On 11/24/2006 Florimondo wrote:

Hi, Im pretty new to the cancer thing Recently diagnosed with tonsil cancer, tonsils went, just had 7 hours surgery on my neck, if you like scars this is the mother of all scars it goes from ear to ear with an uncut bit of 1 inch / 30 mm in the middle [probably to stop my head falling off!!]Dont know yet what my treatment will be but am expecting radiation X 5 per week and Chemo X 1 per week. I know this works best but it seems pretty brutal. Has anyone tried anything else, also interested in alt remedies for side affects. Have read of Ethyol injections for salivary glands. I rather suspect the reason I got this was cause I spent the last 40 years with a glass in one hand and a cigarette in the other [gave up the ciggies two years ago]and generally having to good a time. I am posative as hell, I have support from all around the globe I tell my friends I dont want sympathy I want posative energy, and its working I feel like I could fly/walk on water. I know I have just begun a new battle but there can be only one winner. I think this may get tough so any help advise would be much appreciated.To all other warriors out there, be posative other people get cured and get through the treatment. so can we . Posative energy will beat everything.

Hi,

Just learned I have tonsils cancer, and seems you and I have alot in common. I too had a cigar in one hand and a cocktail in the other for a long time. Bummer.

But on to the future. I'm supposed to have "noninvasive surgery" next week to confirm what the CT scan showed--that there is no spreading of the cancer to adjacent tissue--and then undergoe 5x/week, 6 weeks of radiation and chemo. Obviously, I have lots of questions, but don't know enough to ask them. One thing, though, if how soon after the surgery next week can I travel. I live in NH but spend winter in FL, and hope to go back to FL a day or two after the surgery. Possible?

Look forward to hearing from you.

Rip

Your message was a wonderful tonic for me, and I thank you for it. The message of hope and positive attitude combined with a look at the real world and what can be expected during and after the treatment was an eye-opener.

I, too, have just been diagnosed with tonsil cancer. It's taken me a few days to come to grips with it. Initially, I accepted the word of my ENT doctor and pretty much bought into his plan of treatment. Since then, though, I have decided to slow down just a bit, consider my alternatives and get a second opinion. Thank God for the Internet--I can't imagine trying to learn all about this in pre-Internet days.

Anyway, I appreciate your comments and insights.

I had stage 4 tonsil cancer that had spread into the nodes. I had surgery before by a local small town ent to remove tonsils which later at the U. of Michigan my doctor said was not necessary. I had 7 weeks of radiation(intense) and chemo every Monday for 7 weeks. Pet scan showed cancer free 3 months after treatment ended. I go for my one year pet scan January 2.

 Many doctors and many hospitals do different treatment plans. Please ask questions anytime and I will be glad to help. I wish I had knew about this site during my treatment.

 Ron

My husband, age 48, never smoked, social drinker only, was diagnosed with tonsillar cancer about two weeks ago. We initially treated with our local ENT who did a needle biopsy of a lymph node (right anterior cervical) which had been swollen for nearly a year before he decided to see the doc. The needle biopsy indicated squamous cell carcinoma, he then did surgery to remove the (goose egg size) lymph gland and laryngoscopy with biopsies which showed metatastic squam cell ca of the lymph gland and primary ca site as the right tonsil. He referred us to a radiation oncologist who was ready to roll with 6 weeks rad and out the door. We felt like the whole thing was being handled kind of on the glib side, and decided to go to U of P here in Phila and saw the doc this morning. He was not happy that the lymph gland had been removed - said that the site may have been compromised by this "unnecessary" surgery, and poss ca spread - and his recommendation is for (1) surgery -  DaVinci robotic - to remove the tonsil and surrounding affected tissue, along with insertion of peg then (2) about 3 weeks later neck surgery on the right side to remove the rest of the lymph glands and one saliva gland followed by (3) radiation or chemo or both. I know this sounds rather radical, but it sounds like the right course of action to us. Reading this board, my heart aches, I mean really aches... for what my husband will have to go through in the next year. I think we're doing the right thing, The pain of this is overwhelming right now, but that feeling seems to ebb and flow. We have a 12 year old son with Asberger's Syndrome, who is extremely anxious on his good days, who knows some of what is going on, and we'll fill him in on what's happening soon, but I guess I don't have to tell of you how amazingly hard this is. Sorry, I guess I had to throw myself a pity party. I'm okay when around other people, but here in the office, away from my "boys" it can get to me... you folks have been there and done this... and I know I'll have questions... the first:

How long will the peg be in place? For the duration of the whole radiation/chemo treatment?

 

JanetB - It's been two years since my last treatment for stage 4 tonsillar cancer; thought I might pass along my experiences.    My Oncologists here in NJ/NY  stated that for tonsillar cancer,  they stopped doing neck dissections as a matter of routine about 2-3 years ago because they found that it made no difference in the outcome.  Instead, I underwent agressive chemo and radiation treatments and have been cancer free ever since.   It was a very very tough time, both mentally and phsically.  I now live with the consequences of the radiation (dry mouth, sore jaw, sore shoulder) but consider myself very lucky.  Regarding your question in the PEG tube, I followed the advice of my Onc. and had one installed and it was the best thing I ever did.  My last treatement was early December 2004 and I had it removed March the following year.  I hipe this has helped - hang in there.

 

On 1/28/2007 Mustangfastback wrote:

JanetB - It's been two years since my last treatment for stage 4 tonsillar cancer; thought I might pass along my experiences.    My Oncologists here in NJ/NY  stated that for tonsillar cancer,  they stopped doing neck dissections as a matter of routine about 2-3 years ago because they found that it made no difference in the outcome.  Instead, I underwent agressive chemo and radiation treatments and have been cancer free ever since.   It was a very very tough time, both mentally and phsically.  I now live with the consequences of the radiation (dry mouth, sore jaw, sore shoulder) but consider myself very lucky.  Regarding your question in the PEG tube, I followed the advice of my Onc. and had one installed and it was the best thing I ever did.  My last treatement was early December 2004 and I had it removed March the following year.  I hipe this has helped - hang in ther

I was diagnosed with Tonsil Cancer on 10-11-07, and have had ct scan, petscan, and mri. They say there is cancer in the lymph nodes as well.  My doctors are reccomending aggressive chemo and radiation. But said that they do not suggest surgery..that is a last resort.  So after I read your message I felt better, because all the other messages I read were all about surgery...so that was scary.  I am also going to have the PEG installed as well. The surgery just sounds so radical...I was worried.  Did they ever suggest surgery to you?  Thanks for your message..

I had to have all my teeth removed, and now have dentures..must wait for gums to heal...probably two weeks...and then begin therapy....so we shall see....