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head and neck radiation therapy. options?

lyolan1
Posts: 95
Joined: Jul 2009

Hello Cancer Fighters/survivors,
I just met with my radiation oncologist today and got some disturbing news, maybe I am over reacting. She told me that I would be recieving radiation on both sides of my neck and subsequently would no longer have any salivary glands left because the radiation would make them useless due to the amount and strength of the radiation.
1. Is it the normal course of treatments to have the radiation on both sides of my neck even though I had a left neck disection/left lymphnodectomy and left tonsilectomy? Has any body only had radiation on the affected side of the neck?
2. What is life like with no salivary glands? Bio-teen for life? Poor dental hygene?Dry mouth for life?
3. Has anybody's salivary glands recovered?
4. HPV-16 cancer is so new and so little is known about it that it seems like the doctors are over proscribing medical treatment, it has been intimated that, in five years, the doctors will look back and say "Wow, we put those poor people thru hell with those draconian treatment protocols".
5. Has anybody out there done a scaled back approach to the radiation that saved at least one side of the salivary glands? Since HPV-16 responds so well to treatment? Or am I stuck with a B-52 carpet bombing campaign? Lets wipe out the whole coutryside to get an enemy holed up in a tiny village!
6. Am I freaking out over nothing?
Alex.

lolojldunn
Posts: 37
Joined: Apr 2008

Hi Alex,

Just read your post regarding radiation treatment on both sides of your neck. I don't know that you're freaking out over nothing. I can certainly appreciate your concern regarding the "carpet bombing" approach.

My personal issues were on the right side. The tonsil and a great deal of the surrounding tissue were removed. I had two radiation treatments a day but they were both on the right side. I was given Amifostine (sp) daily in an effort to save my salivary glands. I can't honestly tell you how successful this treatment was. I fight the dry mouth issues that most of the Survivors on this site have fought and are continuing to fight. How bad would it have been if I wasn't given the Amifostine? Good question. Don't know that I'd like the answer.

I haven't heard of the radiation treatment to both sides of the neck. I'm certainly no expert nor due I porport to possess a great deal of knowledge regarding all aspects of cancer treatment. Just like everybody else, I had to rely on the expertise of my medical team. I did have complete trust in their approach to my treatment plan. Had they suggested treatment to both sides of my neck, I would have wanted to know why???

Alex, I'm wishing you the best. Please keep us posted as to how your treatment is progressing.

Take care,

Jim

lyolan1
Posts: 95
Joined: Jul 2009

Hi Jim, Thanks for getting back to me. I hope all is well with you. How long ago did you get treatment? You had cancer in your tonsil and lymphnodes? Radiation onright side only? Are your salivary glands on the left side okay? Jim I want to live just as much as the next person. If I go ahead with the treatment that they have outlined I will live. I want to know if there are alternative treatment methods, ones that solve the problem and limit my long term symptoms, symptoms I just learned of today. Today's appointment really got me riled up. Alex. What about quality of life? How bad is the dry mouth?

lolojldunn
Posts: 37
Joined: Apr 2008

Hi Alex,
I'm two years post treatment, yesterday, August 16th. My primary was in my right tonsil. I don't know if the Doc took any of my lymphnodes. He didn't tell me and I didn't ask. I was told that he took a "considerable amount" of tissue around the tonsil. At that point in time I was petrified by the cancer diagnosis. He could have told me that he took out my spleen at the same time and I wouldn't have paid a great deal of attention to what he said.

Cancer is not a death sentence Alex. It's a major life changing event that none of us ever wanted. But everybody here survived. You will too. It's not for sissies! It will make you reach down inside for strength and courage that you didn't know you had. But I assure you, you WILL find it. We all did.

My salivary glands on the left side function normally. I still use several of the Biotene products. New found habits are harder to break than old ones...Dry mouth is a minor problem that I'm willing to live with. I drink more water now than I ever did. It's ok with me.

I think that the quality of my new post cancer life is probably better than the old one. I've since learned that I not immortal. I have a new appreciation of every day that I'm blessed with. Colors are more vibrant. Life and Love are more important to me now than they ever were. I notice several things around me that I previously took for granted. I'm back to work full time and have a new appreciation for my work.

One of the things that is very important to me is the relationship that I built with my eldest Granddaughter when I was going through treatment. She would sit with me and read me jokes that she got off of the internet. Some were real corny. Others made me laugh until my sides hurt. This exercise taught how important humor and laughter really are.

If you get the chance Goggle Regina Brett on the internet. Regina is a newspaper reporter from Ohio. She's also one of us, a Survivor. She put a list together of fifty of the most important things in life on her fiftieth birthday. Those things have also become very important to me. My son give me the list when I was going through my treatment. It helped me immensely.

Alex, I'm hoping that I offered you some hope and understanding. You will get through this battle.

Take care my Friend,

Jim

lyolan1
Posts: 95
Joined: Jul 2009

Hi Jim, Thanks again for getting back to me. This site is very good and suppottive. I guess that I was under an impression that the cure was brutal but doable. Once treatment stops, your recovery begins. The "long term issues" were not discussed in detail. Today's appointment discussed it in detail, in rather stark terms, with the worst case scenario's. My teeth are in good condition, I have always taken good care of them. How did your teeth fare in the treatment? How long did you have to use the peg tube? Any trouble with your jaw? Alex.

lolojldunn
Posts: 37
Joined: Apr 2008

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

lyolan1
Posts: 95
Joined: Jul 2009

Hi Jim, thanks again for your help and words of wisdom. I felt I was ready for the 2nd stage of the big battle, thought my mind was right, I guess I was not as prepared as I thought, words and information were delivered in a way that scarred the hell out of me. I want a normal standard of living when I am done. Everyone that responded has been very positive and upbeat. I will keep you posted on my progress. Alex.

lyolan1
Posts: 95
Joined: Jul 2009

Hi Jim, thanks again for your help and words of wisdom. I felt I was ready for the 2nd stage of the big battle, thought my mind was right, I guess I was not as prepared as I thought, words and information were delivered in a way that scarred the hell out of me. I want a normal standard of living when I am done. Everyone that responded has been very positive and upbeat. I will keep you posted on my progress. Alex.

tanyap
Posts: 2
Joined: Aug 2009

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.
Thanks

ljoy's picture
ljoy
Posts: 93
Joined: Dec 2007

Four years out from right tonsil cancer. 39 rads 3 rounds cisplatin. I did have surgery to remove both tonsils and one lymph node on the right side.

The IMRT radiation machine rotates around your head and neck delivering radiation from different angles into the affected area. Thus you will get damage to tissue and salivary glands on both sides. I would estimate my saliva at about 60% of original. I have learned to eat a lot of slippery foods, pasta, gravy, etc. I also use water to add moisture to food for swallowing. Milk with pastries. There are some drugs that help produce saliva. You will see on this site that it works for some and not for others. It does work for me.

My tongue and throat are sensitive to spices but other than that I'm very healthy and very happy to have won the battle. There is lots of support here and through the cancer family to help you through it. Your medical team is very important and you will need to comitt to do nothing but concentrating on getting yourself through the treatment.

It is important to follow the recommendations for hydration, nutrition and other procedures required for treatment. You will need to decide if you want a feeding tube (PEG). My opinion is it is better to have a PEG and not need it than to need it and not have it. It is much more difficult to get a feeding tube midway through treatment because of the condition of your throat. I did not take the medicine that helps prevent damage to the salivary glands.As stated, I do have decent saliva now.

Hope this helps. My best to you for successful treatment.

lyolan1
Posts: 95
Joined: Jul 2009

Hi Ljoy, Thanks for getting back to me. I reallly appreciate it. I guess that I am a little freaked out by the way the "long term" scenario's were delivered. How long did you have to use the peg tube? How were your teeth before the radiation? After? Did you get radiation on the opposite sdide of surgery? Alex.

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ljoy
Posts: 93
Joined: Dec 2007

I kept the PEG for two months after treatment. I wanted to be sure I could drink enough and eat before I had it removed. It was not a problem for me. I used it starting the third week of treatment. I had it from June until November. Treatment was July through September.

ljoy's picture
ljoy
Posts: 93
Joined: Dec 2007

Teeth were good. I did have some bone protrusions removed from the lower jaw bone before treatment. Since treatment I get a cleaning every four months instead of six and use extra floride since the saliva is reduced. Good oral hygene is a must during and after treatment.

Radiation was on the same side as surgery. The cancer was in my right tonsil. As I recall the IMRT machine stopped in 7 or 8 places as it rotated around my head delivering the beams of radiation.

lyolan1
Posts: 95
Joined: Jul 2009

Hi ljoy, Thanks again for getting back to me. It sounds like you are doing well and I am happy for you. If I understand you correctly, you still have your salivary gland on your left side and is functioning properly. Is there anything I can do to protect the salivary glands durring radiation? The doctor wants me to do radiation on both sides and the rads will effectively kill the salivary glands. Did you use a peg tube? If so, how long? Alex.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Did not read the entire post chain, but if not already mentioned, you need to ask if your Rad Oncologist offers IMRT (Intensity Modulated Radiation Therapy). If not, I would seriously think about looking for it. And, if you are already to receive IMRT then the person that told you you would lose your salivary glands is, in my opinion, way off target.

Think of it as precision zapology if you will. In my case, in each of 35 sessions, I laid on a narrow table which raised me up so that the IMRT could rotate 360 degrees, usually in a counterclockwise fashion. It would stop in 6 "zones" on each side, total of 12. Average duration of each zone shot was between 10&15 seconds. Then it would move to the next zone. As a reminder, my cancer was left tonsil only but I received equal treatment to all 12 zones and all the way around including lymph node areas on the back of the neck (which is why when you start the emu oil or whatever emollient you use you need to use it all the way around and out from the nape of your neck 2-3 inches). The purpose of IMRT, among others, is to focus the treatment on precise areas (within 1/2MM each time which is the purpose of the mask for locking you in the exact same position each time). With this precision delivery they are able to salvage a lot of the "good" tissue that is not likely to be cancer bearing (i.e.: saliva glands). So, in my case, I never completely lost my saliva. It went down to probably 10% production but is now (almost 2 yr later) at 90% or more.

So, don't despair. Demand IMRT and ask to see their computer profile for each shot, how many shots, duration of each shot, etc. Of course ask specifically if they plan to salvage as much of the saliva glands as possible.

Another note, there are drugs available that are supposed to minimize the impact on the saliva glands (Amifostene, for example). My Chemo Doc and Rad Doc both advised against it saying the side-effects (nausea) were probably not worth what they perceived to be a minimal benefit. So I elected not to take them and I did just fine.

I know others have had good luck with Amifostene and that is fantastic. Just my opinion and experience. Don't shoot the messenger.

Git ur dun.................JK

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

Dude................get the PEG. Read my post "PEG Tube Use and Care 101".

Trust me................you will be very glad you did even if you never need it. Think of it as insurance against dehdration and malnutrition.

GET IT...........GET IT.............GET IT

JK

PS: GET IT!!

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

They are very common and are being understood better all the time. Turns out, according to my sources, that SCC is one of the more common, less-aggressive and best understood forms of the Monster. And, now that they are absolutely sure that HPV positive SCC responds so much better to treatments, I would say you should thank your lucky stars that this is the one you have. My Docs all said the same thing......If you have to have cancer, this is the one to have because they know more about it, it is less-aggresive, and it has a much higher 5 year survival rate.

JK

PS: no such thing as freaking out over nothing. That's the human part of us. But, the way to control your "freaking" and to minimize it is to ask questions until you get the answers you seek.......whether of your healthcare pros or here at the CSN with all of the wonderful, compassionate, experienced folks.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Alex,

Good to see you back on the board. I understand totally what you are going through. Just remember, it's your journey....and everyone is different. Take what advice you can from those close to you, your docs, and others (like this message board). Looks to me like you are getting some great advise from the 'road warriors' who have been through it.

I was diagnosed in 2004 with SCC with 'unknown primary' (YIKES!!). Because of this I got the full treatment....radiation on both sides and front. I took the amifostene M-W-F (learned to love Tuesdays & Thursdays!), but not sure if it helped. I have 50% of my saliva and can eat whatever I want (as long as I have a glass of water). Taste is back, and I don't need to carry a bottle of water with me. I am lucky...not sure if the amifostene helped, but you may want to try it out. If it doesn't fit you, then you can stop.

I am also OK with my teeth. No cavities since the treatments. Brush a lot, and use Biotene toothpaste & mouthwash. See dentist every 4 months.

My radiation doc say that they are much better today with 'focused' practices that can spare salivary glands. Amazing changes in 5 years. I'm sure your docs will give you the best advice.

Remember, you'll get through this. It's a roller coaster, so get ready for the ups and downs. Don't get tied up to time......it moves at a different pace. You will beat this. My dad said that 'the strongest steel goes through the hottest fire'.

George

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

Jkinobay is exactly right i would just retype what he wrote.
I got both sides done and i wanted it. I wanted the most chemo and the most radiation and then the best operation i could get.
It sucked week 3 thru 7 of radiation and the 2 months after radiation.
But i feel great now my taste buds are still not that great. But my saliva aint too bad id say 85% of normal. I had rads both sides 7 weeks with doubles on fridays. Have to have imrt . Get a port and a peg tube and a feeding pump and get as much nutrition and fluid into you.
The more nutrition and fluid you get in you the better you feel.

lyolan1
Posts: 95
Joined: Jul 2009

Hi Victor, thanks for your time and support. It seems like I may be obsessing over the rad/salivary gland. I can handle 80% saliva. I just do not want 0%. The teeth, should be okay because they are in good shape. The radiation is what it is going to be on my neck, can't be helped. I am seeking more opinions and numbers regarding the right side rads. Keep in touch. Alex.

lyolan1
Posts: 95
Joined: Jul 2009

Hi George, Thanks so much for the words of encouragement. I thought I was good with the whole treatment process and then the oncologist said some things that alerted my little intuition voice in me. I am going to go back to my original team in Boston for some opinions on treatment process and choices. I will be in touch soon. Still working and preparing for my upcomming rad/chemo. Alex.

lyolan1
Posts: 95
Joined: Jul 2009

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.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

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

lyolan1
Posts: 95
Joined: Jul 2009

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.

JGE
Posts: 50
Joined: Mar 2009

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.

lyolan1
Posts: 95
Joined: Jul 2009

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 ass. I hope all is well with you, and that your recovery is complete. Alex.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

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

lyolan1
Posts: 95
Joined: Jul 2009

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.

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Alex,

You'll make the right decision. And you will beat this.

I hear that Mass General is a great place.

Keep us posted.

George

JGE
Posts: 50
Joined: Mar 2009

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!!

TIM_WWJD
Posts: 38
Joined: Jan 2009

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

lyolan1
Posts: 95
Joined: Jul 2009

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 ass 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.

lyolan1
Posts: 95
Joined: Jul 2009

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 ass 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.

lyolan1
Posts: 95
Joined: Jul 2009

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 ass 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.

lyolan1
Posts: 95
Joined: Jul 2009

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.

lyolan1
Posts: 95
Joined: Jul 2009

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.

Craig_Griffin's picture
Craig_Griffin
Posts: 32
Joined: Feb 2009

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.

JGE
Posts: 50
Joined: Mar 2009

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!

lolojldunn
Posts: 37
Joined: Apr 2008

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

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

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..............

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

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.
Donna

JGE
Posts: 50
Joined: Mar 2009

When given lemons, make lemonade!

I have searched and searched for an explaination as to why this happened to me. I have found no answers. Rather than continue my search I simply accept the fact that I needed a kick in the ars to let me know that I wasn't getting "it". Now I have the opportunity to get so much more out of the rest of my life. Now I have no excuse for not seeing the bigger picture.

Funny though, I am surprised at how difficult it is to change the way you have been for years. Takes a while to change but change for the better is worth it! I would rather have half as many years with my new perspective than with the old.

And you guys thought cancer was a bad thing. :)

kambrose88
Posts: 1
Joined: Apr 2010

Sorry to be so blunt Alex but you just said everything i thought also. I call the treatment barbaric (and this is kind). The hell you speak of will probably be for real and here's the kicker. it may all be for naught. I opted for the scaled back treatment, but the doctor started doing what he wanted to do (carpet bombing) but i call it search for a needle in a haystack approach. They called it "Areas of risk"
Alex you have to personally make these decisions yourself. Dont try to make them in the presence of the doctors because they will absolutely convince you to do it their way. take your time and decide what Alex wants.

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