head and neck radiation therapy. options?
Comments
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Your diagnosis is a carbon copy of minelyolan1 said:radiation options
JK, Thanks again for everything. I really appreciate it. When I am finished I hope that I can help someone though this. I am getting the peg tube for sure and the IMRT. Maybe the Oncologist wanted to lay it out in the worst case scenario, and if I did better, then good all the way around. I'm still trying to figure out why she said that I would lose both glands and have no saliva. She said that they do not regenerate. Also, because everything is so close, it is unavoidable to not hit the salivary glands. Again, since HPV-16 is so treatable, responds so well to radiation/chemo, my cancer was "encapsulated" in the tonsil and contained within my lymph nodes, was not in the surrounding tissue or blood vessels, why the severe treatment on my right side. Until I hear back from the Boston team, I am leaning toward a minimal dose of rads on my right side. Alex.
The two terms that made my Docs happier were "HPV16" and "encapsulated". Because of those two they raised my 5yr. survival rate to 90%.
As for the saliva glands, yes they will be impacted but they have to be because SCC is a blood born disease and loves to re-route itself through the body to "blood-users" such as heart, liver, lungs, kidneys and yes even saliva glands.
However, let's say the total cubic inches of saliva glands you have is "X". Of "X" a significant percentage, "Y", will be spared thanks to the IMRT technology. And of that portion that is directly in the line of fire, a certain amount of it may even recover over time.
All that to say, in most of our cases we have seen an improvement in taste and saliva over time to a "new normal" level that we are more than happy to live with. Based on what you tell us of your situation at present, I am confident that you will have a very similar result.
You will do fine. It will not be fun. It will not happen as quickly as you would like. But it will happen. And, the alternative is unacceptable. If you don't believe me, ask your wife or ask your children.
Hang in there................we're here for you. JK0 -
One chance to get it all
I copied this from "CancerCompass.com" where I origianlly wrote it for a guy who kept questioning wether there really was any 5 year SCCHN survivors. A lot of it applies here so I copy and pasted it. As far as radiating both sides of your neck, they only have one shot to get ALL the cancer and you would not want to look back later and wish you had treated it more aggressively.
...42 years old. Base of Tongue. Almost a year from Rads and Cisplatin. Taste was bad for a few months. Still not back to normal. Saliva still getting better. Prob never be "normal". I can and do eat everything I did before. Wet things are better. Water with everything. ENT said whatever I have after a year is what I am going to get. Getting close.
Ditched the PEG tube 6 weeks after treatment ended despite doctors resistance. Hadn't swallowed at all for over a month by the end of treatment. Couldn't stand the PEG. Rad doctor mentioned checking me for a permanent problem with swallowing and I went home that day and started eating by mouth.
Weight gain is slow. lost 45+ lbs total. got back about 25 to 30 now.
Many if not most people diagnosed today live beyond 5 years if they successfully complete treatments. Especially when you factor out the people who continue to smoke. Especially when you factor in HPV. Especially if you factor out the elderly who have a more difficult time with the aggressive treatment. If you are looking for a way out, look someplace else.
My ENT has been practicing for over 30 years. He said that he gets about 2 new SCCHN patients a month and has NEVER had someone die from it. Some have died, just not from SCC. They have been talking "cure" from the beginning. If you get an oncoligist to say "cure" vs. "remission" that is a big deal. Except for very advanced cases, this cancer is very treatable.
Be prepared to die from something else.0 -
Rad TratmentsJGE said:One chance to get it all
I copied this from "CancerCompass.com" where I origianlly wrote it for a guy who kept questioning wether there really was any 5 year SCCHN survivors. A lot of it applies here so I copy and pasted it. As far as radiating both sides of your neck, they only have one shot to get ALL the cancer and you would not want to look back later and wish you had treated it more aggressively.
...42 years old. Base of Tongue. Almost a year from Rads and Cisplatin. Taste was bad for a few months. Still not back to normal. Saliva still getting better. Prob never be "normal". I can and do eat everything I did before. Wet things are better. Water with everything. ENT said whatever I have after a year is what I am going to get. Getting close.
Ditched the PEG tube 6 weeks after treatment ended despite doctors resistance. Hadn't swallowed at all for over a month by the end of treatment. Couldn't stand the PEG. Rad doctor mentioned checking me for a permanent problem with swallowing and I went home that day and started eating by mouth.
Weight gain is slow. lost 45+ lbs total. got back about 25 to 30 now.
Many if not most people diagnosed today live beyond 5 years if they successfully complete treatments. Especially when you factor out the people who continue to smoke. Especially when you factor in HPV. Especially if you factor out the elderly who have a more difficult time with the aggressive treatment. If you are looking for a way out, look someplace else.
My ENT has been practicing for over 30 years. He said that he gets about 2 new SCCHN patients a month and has NEVER had someone die from it. Some have died, just not from SCC. They have been talking "cure" from the beginning. If you get an oncoligist to say "cure" vs. "remission" that is a big deal. Except for very advanced cases, this cancer is very treatable.
Be prepared to die from something else.
Hello JGE, Thanks for the time to get back to me, much appreciated. I have resigned myself to the "whole 9 yards" treatment approach. I cannot help but want a little control, afterall control is the master addiction. The hell with it, I am going to do what they say and live with the consequences, made up my mind last night. I have a lot to live for. What's a little dry mouth to put up with. I think every body wants to feel a little sorry at first, only natural. I start 9/2 and end 10/22. I 've tried looking else where and there is no other way out. I saw a funny t-shirt yesterday, "The beatings will stop when moral improves". What can I say, dark humor is funny. Thanks for the kick in the ****. I hope all is well with you, and that your recovery is complete. Alex.0 -
Rad Treatmentsjkinobay said:Your diagnosis is a carbon copy of mine
The two terms that made my Docs happier were "HPV16" and "encapsulated". Because of those two they raised my 5yr. survival rate to 90%.
As for the saliva glands, yes they will be impacted but they have to be because SCC is a blood born disease and loves to re-route itself through the body to "blood-users" such as heart, liver, lungs, kidneys and yes even saliva glands.
However, let's say the total cubic inches of saliva glands you have is "X". Of "X" a significant percentage, "Y", will be spared thanks to the IMRT technology. And of that portion that is directly in the line of fire, a certain amount of it may even recover over time.
All that to say, in most of our cases we have seen an improvement in taste and saliva over time to a "new normal" level that we are more than happy to live with. Based on what you tell us of your situation at present, I am confident that you will have a very similar result.
You will do fine. It will not be fun. It will not happen as quickly as you would like. But it will happen. And, the alternative is unacceptable. If you don't believe me, ask your wife or ask your children.
Hang in there................we're here for you. JK
Hi JK, Whats happening Amigo? I made up my mind last night. I am going to accept the treatment the doc's recommend, made up my mind last night. thanks again. I start 9/2-10/22.
Alex.0 -
5 Years and Still Kickin'!!!lyolan1 said:Rad Tratments
Hello JGE, Thanks for the time to get back to me, much appreciated. I have resigned myself to the "whole 9 yards" treatment approach. I cannot help but want a little control, afterall control is the master addiction. The hell with it, I am going to do what they say and live with the consequences, made up my mind last night. I have a lot to live for. What's a little dry mouth to put up with. I think every body wants to feel a little sorry at first, only natural. I start 9/2 and end 10/22. I 've tried looking else where and there is no other way out. I saw a funny t-shirt yesterday, "The beatings will stop when moral improves". What can I say, dark humor is funny. Thanks for the kick in the ****. I hope all is well with you, and that your recovery is complete. Alex.
Ditto to JGE. I am now 5 1/2 years post surgery and the 'beat down' of rad & chemo........and still here. I think you'll surprise yourself on how tough you are. Cancer is a beast and doesn't go down without a fight. But you will beat it....no doubt.
Find some good videos, books, magazines. I found out how crummy daytime TV is.....but did manage to find a few good shows.
Keep a diary.....it did me good. Have your kids write stuff in it. My little ones decorated it.
Be your own advocate.....the docs and nurses are smart, but trust yourself and the good advice I see on this postboard. Try not to spend too much time listening to 'horror stories'.
Brace yourself for a lot of cards and well wishes. It makes you think how lucky you are. YOu will be surprised how some people that you least expect become part of your journey.
Also, be ready for the 'lull' in the cards after the first month.......it doesn't mean people don't care.
Alex, you will do fine on the roller coaster......
George0 -
radiation/ optionsBeenThereDoneThat said:5 Years and Still Kickin'!!!
Ditto to JGE. I am now 5 1/2 years post surgery and the 'beat down' of rad & chemo........and still here. I think you'll surprise yourself on how tough you are. Cancer is a beast and doesn't go down without a fight. But you will beat it....no doubt.
Find some good videos, books, magazines. I found out how crummy daytime TV is.....but did manage to find a few good shows.
Keep a diary.....it did me good. Have your kids write stuff in it. My little ones decorated it.
Be your own advocate.....the docs and nurses are smart, but trust yourself and the good advice I see on this postboard. Try not to spend too much time listening to 'horror stories'.
Brace yourself for a lot of cards and well wishes. It makes you think how lucky you are. YOu will be surprised how some people that you least expect become part of your journey.
Also, be ready for the 'lull' in the cards after the first month.......it doesn't mean people don't care.
Alex, you will do fine on the roller coaster......
George
Hey George, Great to hear from you. I know that I will make it, because I have to. I was just concerned about the long term dry mouth. I don't want to beat a dead horse, but, I amstill going back and forth with the dr's regarding the amount of radiation. The HPV 16 tonsil cancer falls into a an unknown "grey zone" because nobody knows how much is enough. I am getting treated in Boston at Mass General and Mass Eye and Ear. The ENT and the Medical oncologist are tops in their field. After surgery, my ENT was so pleased with the surgery and findings, that he thought that I would not need chemo. However, the medical oncologist still felt that weekly treatments of erbitux would be the best way to go. The radiation still seems to be out of line with the disease. Still waiting on my decision. Alex.0 -
Decisionslyolan1 said:radiation/ options
Hey George, Great to hear from you. I know that I will make it, because I have to. I was just concerned about the long term dry mouth. I don't want to beat a dead horse, but, I amstill going back and forth with the dr's regarding the amount of radiation. The HPV 16 tonsil cancer falls into a an unknown "grey zone" because nobody knows how much is enough. I am getting treated in Boston at Mass General and Mass Eye and Ear. The ENT and the Medical oncologist are tops in their field. After surgery, my ENT was so pleased with the surgery and findings, that he thought that I would not need chemo. However, the medical oncologist still felt that weekly treatments of erbitux would be the best way to go. The radiation still seems to be out of line with the disease. Still waiting on my decision. Alex.
Alex,
You'll make the right decision. And you will beat this.
I hear that Mass General is a great place.
Keep us posted.
George0 -
One shot
Just remember, you only get one chance. You want to annihilate it!
It is all about scientific proof. You have to look at studies over time. That is the only way doctors (at least the good ones) work. They want to see which treatment had the best results for the most people for the longest time. Then they consider Quality of life and make a plan of action. Your doctors don't want you to short yourself out of fear. Their success also determines their reputation.
Gene Wilder said in Willy Wonka, "you can't go back... you have to go forward to get back". Pretty deep for a kids movie but very true. Do what you need to do to save your life and then get back to living it. You have to go forward to get back!!0 -
I am sorry I posted my remarks on the other thread you started before I read this one. It sounds like you are already in the middle of this but read this thread well. Eveyone has given you some great advice and like JK said it is entirerly possible that they are wrong about the total loss of saliva. But even if so in the big picture it is something that can be delt with and the alternative is not pretty. Keep your spirits up because that does help. One thing I can add that during radiation treatment keep your skin moistened with an oil free lotion. Even from the begininng it will help later on.JGE said:One shot
Just remember, you only get one chance. You want to annihilate it!
It is all about scientific proof. You have to look at studies over time. That is the only way doctors (at least the good ones) work. They want to see which treatment had the best results for the most people for the longest time. Then they consider Quality of life and make a plan of action. Your doctors don't want you to short yourself out of fear. Their success also determines their reputation.
Gene Wilder said in Willy Wonka, "you can't go back... you have to go forward to get back". Pretty deep for a kids movie but very true. Do what you need to do to save your life and then get back to living it. You have to go forward to get back!!
Tim0 -
radiation optionslolojldunn said:Radiation/options
Good morning Alex,
Ljoy offers up sound information that I overlooked. When you are going through the radiation treatments the machine does rotate to radiate the targeted area from different angles. In my case, I think that the majority of my exposure was on the right side of my neck as that is where I experienced the burning. The radiation dept.staff that I worked with were absolutely awesome. They provided great advise regarding "burn" treatment and did a wonderful job of trying to alleviate my fears.
You're right. In my case, I thought that the treatment was indeed brutal. Matter of fact, my radiation Doc who I have had the good fortune to know on a personal level, was brutally honest with me. She stated that she was going to "kick my butt". She lived up to that statement...About half way through my "two a day" and weekly Cisplatin, I got sicker than a dog. She give me a week off to "heal up".
I had the PEG tube and port installed before the marathon begin. I used the tube for a couple of months after my treatments ended. Your throat is going to be sore. Keep trying to shallow. You don't want those muscles to atrophy.
My teeth were in great shape prior to starting treatment. My dentist made me two set of tray's. One was thicker that I used during my radiation treatments and the other was used for floride treatments in the evenings. My last check-up showed my teeth to still be in great shape.
I didn't experience any jaw problems to speak of. I have TMJ that's been a problem for many years prior to cancer. I've learned to live with it.
Take care Alex,
Jim
Hello. This is for Jim and whoever else can give me information. I have been reading some of your postings and noticed that you had radiation and cisplatin. I am curious about it because starting Wenesday my 64 year old father will be going through the chemo and today he starts the radiation. They do not know what is causing his tumors but he has one on his neck that is about the size of an orange and then 2 more under it. Found out that he has a couple on his liver and one near his diaphram. He used to take CFR because of his CLL and that was bad enough. The doctors say that this will be worse due to the fact that they are sure that no matter what they do; the tumors may keep coming back. What is your opinion? Would like information.
Thanks0 -
One ShotJGE said:One shot
Just remember, you only get one chance. You want to annihilate it!
It is all about scientific proof. You have to look at studies over time. That is the only way doctors (at least the good ones) work. They want to see which treatment had the best results for the most people for the longest time. Then they consider Quality of life and make a plan of action. Your doctors don't want you to short yourself out of fear. Their success also determines their reputation.
Gene Wilder said in Willy Wonka, "you can't go back... you have to go forward to get back". Pretty deep for a kids movie but very true. Do what you need to do to save your life and then get back to living it. You have to go forward to get back!!
Hi JGE, Thanks for getting back to me. I am starting my treatments this week. I am on board with the treatment regimen. There really is only one sure way to go. I want to nail it the first time too. Alex.0 -
One ShotJGE said:One shot
Just remember, you only get one chance. You want to annihilate it!
It is all about scientific proof. You have to look at studies over time. That is the only way doctors (at least the good ones) work. They want to see which treatment had the best results for the most people for the longest time. Then they consider Quality of life and make a plan of action. Your doctors don't want you to short yourself out of fear. Their success also determines their reputation.
Gene Wilder said in Willy Wonka, "you can't go back... you have to go forward to get back". Pretty deep for a kids movie but very true. Do what you need to do to save your life and then get back to living it. You have to go forward to get back!!
Hi JGE, Thanks for getting back to me. I am starting my treatments this week. I am on board with the treatment regimen. There really is only one sure way to go. I want to nail it the first time too. Alex.0 -
All of ThisTIM_WWJD said:I am sorry I posted my remarks on the other thread you started before I read this one. It sounds like you are already in the middle of this but read this thread well. Eveyone has given you some great advice and like JK said it is entirerly possible that they are wrong about the total loss of saliva. But even if so in the big picture it is something that can be delt with and the alternative is not pretty. Keep your spirits up because that does help. One thing I can add that during radiation treatment keep your skin moistened with an oil free lotion. Even from the begininng it will help later on.
Tim
Hi Tim, Good to hear from you. I am going through with the treatments. I like the "Willy Wonka" reference. I really do have to forward with the treatments to kill this pain in the **** disease. When it is over, hopefully, I can get back to living. I am already sick of the scheduling, interuptions from life, appointments, phone calls..... I take my first step forward to get back to my old life tomorrow. Alex.0 -
All of ThisTIM_WWJD said:I am sorry I posted my remarks on the other thread you started before I read this one. It sounds like you are already in the middle of this but read this thread well. Eveyone has given you some great advice and like JK said it is entirerly possible that they are wrong about the total loss of saliva. But even if so in the big picture it is something that can be delt with and the alternative is not pretty. Keep your spirits up because that does help. One thing I can add that during radiation treatment keep your skin moistened with an oil free lotion. Even from the begininng it will help later on.
Tim
Hi Tim, Good to hear from you. I am going through with the treatments. I like the "Willy Wonka" reference. I really do have to forward with the treatments to kill this pain in the **** disease. When it is over, hopefully, I can get back to living. I am already sick of the scheduling, interuptions from life, appointments, phone calls..... I take my first step forward to get back to my old life tomorrow. Alex.0 -
All of ThisTIM_WWJD said:I am sorry I posted my remarks on the other thread you started before I read this one. It sounds like you are already in the middle of this but read this thread well. Eveyone has given you some great advice and like JK said it is entirerly possible that they are wrong about the total loss of saliva. But even if so in the big picture it is something that can be delt with and the alternative is not pretty. Keep your spirits up because that does help. One thing I can add that during radiation treatment keep your skin moistened with an oil free lotion. Even from the begininng it will help later on.
Tim
Hi Tim, Good to hear from you. I am going through with the treatments. I like the "Willy Wonka" reference. I really do have to forward with the treatments to kill this pain in the **** disease. When it is over, hopefully, I can get back to living. I am already sick of the scheduling, interuptions from life, appointments, phone calls..... I take my first step forward to get back to my old life tomorrow. Alex.0 -
Loss after radiation treatmentlyolan1 said:One Shot
Hi JGE, Thanks for getting back to me. I am starting my treatments this week. I am on board with the treatment regimen. There really is only one sure way to go. I want to nail it the first time too. Alex.
Alex,
I see your raditation treatment begins on 9/2/09 and that you have decided to go with it. It is good for you to resolve this for yourself in advance. I had to make the same decision as you did, only without any guidance from this site at the time. Everyone responds to cancer treatment differently, and experimenting over and over with a light treatment is not a good option. That is probably why your team at MGH will be agressive with yours. I had chemotherapy followed by radiation for stage 4 tongue base cancer. For the past 11 months I have used water to make up for non-functioning salivary glands. This includes at night during sleep hours. In my own experience when I asked my radiation oncologist why I was getting the extent of radiation target area dosage, he stated that he attempted to make it lighter, but that due to my CATscan and PETscans his team agreed to expand the area to be treated. I was not happy about it, but quite convinced. And yes, with cancer only on 1 side, both sides were affected by the radiation. It surprised me when one of my former employers said "we'll keep you in our prayers". I was glad that they did. I am certain that they knew what was a stake. I hope this helps with your treatment. -Craig.0 -
Bump in the roadlyolan1 said:One Shot
Hi JGE, Thanks for getting back to me. I am starting my treatments this week. I am on board with the treatment regimen. There really is only one sure way to go. I want to nail it the first time too. Alex.
Before I was diagnosed, I walked around completely oblivious to just how much hardship people actually go through. For example, you may have passed hundreds of people in your life that had successfully beaten many forms of cancer. But we as people are so focused on ourselves and our own lives that you don't give any thought to them. Although our life was no more important than anyone elses, we just act as though we are invincible and nothing can happen to us. Then suddenly it does happen to you and it is a big deal. You expect everyone to somehow be different than you were but they are not. I explained it to my own doctor by saying "life was so sweet when I was naive... and I will never get that back". I am going to miss being ignorant.But, that is what they mean by our "new normal".
You will be cancer free again... soon. But you will never be the same. You will be better in many ways and be amazed at how clueless you were about the reality of how fragile life is. Cancer is a complicated disease. Not as much because of what it does to the health of your body. But what it does to your mind!
Wake up every day during treatments and just push forward to get to the next day. Then when it is over, wake up EVERY day and think about what you can do to make someone else's life better. If you are not so focused on yourself, you won't have time to worry about cancer returning or what your future holds. You will simply have a reason to live because others are counting on you to make their life better. In turn, yours will be perfect again!0 -
Bump in the roadJGE said:Bump in the road
Before I was diagnosed, I walked around completely oblivious to just how much hardship people actually go through. For example, you may have passed hundreds of people in your life that had successfully beaten many forms of cancer. But we as people are so focused on ourselves and our own lives that you don't give any thought to them. Although our life was no more important than anyone elses, we just act as though we are invincible and nothing can happen to us. Then suddenly it does happen to you and it is a big deal. You expect everyone to somehow be different than you were but they are not. I explained it to my own doctor by saying "life was so sweet when I was naive... and I will never get that back". I am going to miss being ignorant.But, that is what they mean by our "new normal".
You will be cancer free again... soon. But you will never be the same. You will be better in many ways and be amazed at how clueless you were about the reality of how fragile life is. Cancer is a complicated disease. Not as much because of what it does to the health of your body. But what it does to your mind!
Wake up every day during treatments and just push forward to get to the next day. Then when it is over, wake up EVERY day and think about what you can do to make someone else's life better. If you are not so focused on yourself, you won't have time to worry about cancer returning or what your future holds. You will simply have a reason to live because others are counting on you to make their life better. In turn, yours will be perfect again!
Well said JGE...Don't know that I've ever read a better explanation of the effects of cancer and the "new normal" that all Survivors experience.
Again, well said.
Jim0 -
A second to JGE's motionlolojldunn said:Bump in the road
Well said JGE...Don't know that I've ever read a better explanation of the effects of cancer and the "new normal" that all Survivors experience.
Again, well said.
Jim
He is right on.
Hey Lyolan...............buenos suerte manana (good luck tomorrow).
We are all pulling for you.
You will do fine.
JK
PS: ducking Hurricane Jemina right now PLUS two confirmed cases of Swine FLu in my office in Mexico. Yuck..............0 -
Life is goodjkinobay said:A second to JGE's motion
He is right on.
Hey Lyolan...............buenos suerte manana (good luck tomorrow).
We are all pulling for you.
You will do fine.
JK
PS: ducking Hurricane Jemina right now PLUS two confirmed cases of Swine FLu in my office in Mexico. Yuck..............
Hello Everyone,
JGE is so right and very well said. My husband is almost done with treatment. He has only 12 rads left and one more chemo. I am ready for our "new normal" and I am willing to take anything as long as we are together and happy. We both have a new outlook on life. I take it all in. When I run into people in stores or various places and they are in a bad mood I just think, "you never really know what's going on in their life". I know how you feel Alex about all the appointments and scheduling. It is exhausting but it brings you one day closer to getting better and getting your life back. JK-Duck!
Peace be with you all.
Donna0
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