Can I risk not having radiation?

Agatha

MarineE5 said:

I forgot to mention
Agatha,

I think that you might be up to taking an on-line course as you will be able to work on it on your own time schedule.

What happened with me recently was I noticed that my energy level had dropped and that I was starting to gain weight even though I didn't increase my calorie intake. Had the bloodwork done and then found out that my thyroid was now out of whack.

I forgot to address one of your concerns and that is the effects of the radiation on your teeth. Have any of your Doctors mentioned to see a Cancer Dentist? I was fortunate to have a Cancer team and the Dentist at the Hospital deals with many head and neck patients. He informed me that I would need to do Flouride Treatments daily for the rest of my life. He fitted me with a set of Trays for the Flouride. I used the trays without the flouride during the actual radiation treatment. I was told that it would help protect my teeth, I don't really know it that is true or not, but I followed orders : )

There are some flourides that you can brush on your teeth and let it set for 30 minutes and then rinse. I have only had 1 cavity in 6 years, so that is pretty darn good in my eyes. I too dread the thoughts of having to use the hyber-baric chamber, so I try my best to take care of the teeth that I have. I don't want any teeth pulled and possible problems down the road.

My Best to You and Everyone Here

Teeth
Yes, three weeks after my surgery I had all 4 wisdom teeth taken out just in case I would have problems in the future. Hopefully I will never need any other extractions.
They also mentioned flouride treatments, but they never told me to wear those during radiation, I wonder if that really works.

Thanks for the info.
All the best.

Agatha

mswijiknyc said:

thoughts from a caregiver
I am the sole caregiver to my husband who has aggressive stage IV laryngeal cancer. He had a complete laryngectomy with a radical bilateral neck dissection October 1. In one of your posts, you mentioned how all sorts of terms get thrown at you, so let me boil this down a bit:

My hubby had all of the lymph nodes in his neck removed, his voice box and windpipe completely removed, and the tumor peeled away from his carotid artery. Because there was so little room to work with and so much tumor, his surgeon left markers in place for the radiation oncologist to be able to pin point where the beam should go.

That said, hubby wanted to wait until after New Year's to begin any treatment. He was (at the time) very insistant that chemo not be an option. We were told today he needs to start RIGHT NOW to extend his life. There is absolutely no guarantee that this will get everything and the chance of NED at this point is small. If he had started sooner this may not be the case.

So your original post begs the question: how long do you want to live and how bad do you want it?

I really hope it all turns
I really hope it all turns out well for your husband.

All the best.

Agatha

kingcole42005 said:

Hi Agatha,
You know I'm in the same boat as you. I'm on week four of radiation but I also often wonder if it is wise to just jump in without enough knowledge. We trust in them to give us all the information to give us their opinions, and we can also do some research on our own. But are we really making an informed decision when we jump right into radiation. I wasn't given any time to make that decision, it was do it now or you can't do it at all. I didn't feel I was armed with enough knowledge of my own to feel comfortable radiating my body with the same thing that can cause my type of cancer (mucoepidermoid carcinoma can be caused by radiation exposure.) I want to quit all the time, the side effects are horrendous and I often wonder am I helping or hurting myself even more. I was told the radiation they give me can cause cancer, that it can kill the bones in my jaw and my teeth. That I can lose my taste forever and not be able to open my mouth all the way. That it can cause irreparable damage to my esophagus, yet I'm doing it because that is what I was told to do by my doctors. I completely understand what you are going through. I was told there is a 30% chance of my cancer returning without radiation and a 5 to 10% chance with radiation. I wonder though what are the odds of radiation causing additional cancer, and bone death, and all the other irreparable side effects? I struggle constantly, so I don't have any advice, but I'm glad I'm not alone in the way I feel. Shelly

Hi Shelly
I know, I guess we will never know. I will always wish that I never had to do radiation, which I am sure is how many people feel. I am trying to look on the positive side that this may actually save my life and that I even though I can't live like the way I did before, hopefully I can still live a good life. I have no choice, they told me there is such a high chance it will come back if I don't do it. How do we really choose not to if we are told that? It is all about trust. And I can't focus on all the negative while going in everyday, but believe me, I know how hard it is. I know nothing people can say will make it better, but I hope it does give you some comfort that you are not alone.
All the best.

Agatha

ekdennie said:

treatment
agatha,
because it is squamous cell, I would stick to the radiation. If they feel that you can have a cure...then go for it. It is hard and it sure does stink that you are having to go through this. You are fighting to get rid of something that is trying to take over your life, but you can beat it...you are stronger than cancer.
although this answer stinks, sometimes you just can't explain why one person gets cancer and someone else doesn't. One of my cousin's lost her oldest son when he was barely 13 to brain cancer. he had fought so hard for almost 2 years when he lost his fight. he was the sweetest boy, he had great dreams, and I am saddened that he never got to reach them, but he was my inspiration whenever I started to feel down. I felt that if he could go through some extremely scary treatments and stay brave then I could find a way to do the same. there are still times when I just want to break everything in sight, where i want to yell, but I have three young children at home...I don't want them to remember that when mommy was going through treatment for cancer she was depressed and angry all the time...I want them to remember that mommy would wake up to see them off to school or mother's day out with big hugs and kisses. I still hope to have one more kid someday.
a phrase that I repeated over and over to myself was this: I may have cancer, but cancer may not have me. have your pissed off days, scream and shout it out, write how you feel and vent (a warning that you are venting is always nice), but then look yourself in the mirror and remember that you are at war. if you give up then the cancer wins. I don't know about you, but that is not an option for me! there is just too many things I still want to do.
Hugs!
elizabeth

Thank you
Elizabeth, thanks a lot for your words of encouragement. That is so sad to hear about your cousin's child. I read your profile and I see that you too have a strong faith. I know terrible things happen, but with suffering we develop compassion. I am sure he is safe now looking down on you as you fight.
I get those days, too. You sound like such an unbelievably strong and positive person. I am sure your children will recognize just how strong you are when they get older. Continue to stay strong and so positive, it is so nice to see. I am definitely trying my best because there is still a lot I would like to do as well.
Hugs!
Agatha

John oldtmr

Agatha said:

Thank you
Elizabeth, thanks a lot for your words of encouragement. That is so sad to hear about your cousin's child. I read your profile and I see that you too have a strong faith. I know terrible things happen, but with suffering we develop compassion. I am sure he is safe now looking down on you as you fight.
I get those days, too. You sound like such an unbelievably strong and positive person. I am sure your children will recognize just how strong you are when they get older. Continue to stay strong and so positive, it is so nice to see. I am definitely trying my best because there is still a lot I would like to do as well.
Hugs!
Agatha

Radiation
Agatha, Just got back on and was reading your posts. As far as the teeth the fluoride trays are more for after. I shouldn't be giving advice on this 'cause I'm not doing as I'm supposed to. My dentist said to use them every couple of days to prevent cavities and the oncologist said the same thing. As young as you are get a prescription for the fluoride and use it. Also my dentist said that they now also do a root canal then grind the tooth down and leave it there and let the gum grow over it.
As far as the radiation goes I would definitely have it. I had 6wks. 2 a day for the last 7 days. Chem once a wk. but not the bad stuff. It made the tumor more susceptible to the radiation. Also had Amophostine shot before each treatment to help with saliva. I had base of tongue tumor that had started up the neck and 1 lymph node. I was very lucky as they got it all with the radiation. I've been cancer free for 16mos.
Hang in there and don't wait!!
John

Skiffin16

Agatha said:

Hi Shelly
I know, I guess we will never know. I will always wish that I never had to do radiation, which I am sure is how many people feel. I am trying to look on the positive side that this may actually save my life and that I even though I can't live like the way I did before, hopefully I can still live a good life. I have no choice, they told me there is such a high chance it will come back if I don't do it. How do we really choose not to if we are told that? It is all about trust. And I can't focus on all the negative while going in everyday, but believe me, I know how hard it is. I know nothing people can say will make it better, but I hope it does give you some comfort that you are not alone.
All the best.

Live like the way I did....
Maybe you'll live life better than you did before.

In my case an many others, this has enlightened me. Things that used to be a big deal to me, aren't so much now. Things that weren't as important to me then, tend to be more important to me now.

In realitiy, I'm 18+ months out now, and honestly, other than some fears of recurrence, I pretty much live life as I did before, only wiser and more educated. This is not entirely about you....it also affects your spouce, children, and family that you also have to consider how your choices will impact.

It hasn't beaten me, maybe slapped me around a litlle, but I am still me. I can eat nearly anything that I want and without compromise. Yes, I have a few bugs here and there from it, but I do also from several things I've encountered during my life.

I have always said those things that make me unique are what gives me chracter. It's what separates me from others. It's who I am......

I see people a lot younger than I am, that are dealing with much more physical hardships than I'm going through. They do it, they adapt, that's who they are, they accept that, deal with it, learn from it, and teach people like me.....

Best,
John

Kent Cass

Skiffin16 said:

Live like the way I did....
Maybe you'll live life better than you did before.

In my case an many others, this has enlightened me. Things that used to be a big deal to me, aren't so much now. Things that weren't as important to me then, tend to be more important to me now.

In realitiy, I'm 18+ months out now, and honestly, other than some fears of recurrence, I pretty much live life as I did before, only wiser and more educated. This is not entirely about you....it also affects your spouce, children, and family that you also have to consider how your choices will impact.

It hasn't beaten me, maybe slapped me around a litlle, but I am still me. I can eat nearly anything that I want and without compromise. Yes, I have a few bugs here and there from it, but I do also from several things I've encountered during my life.

I have always said those things that make me unique are what gives me chracter. It's what separates me from others. It's who I am......

I see people a lot younger than I am, that are dealing with much more physical hardships than I'm going through. They do it, they adapt, that's who they are, they accept that, deal with it, learn from it, and teach people like me.....

Best,
John

Agatha
This is C, Agatha. C only means one, bottom-line thing, in the end, if it is not done battle with by the carrier.

1. Do you have confidence in your Drs.? If yes, then you must lean towards their best advice. If not, then find another set of Drs.

2. The rule-of-thumb for H&N, which has a good chance for survival, is to error on the side of the aggressive. One must be cautious with all test results, but one must accept the results of Biopsy. If it was C, then the logical best route is overkill on the C.

3. The side-effects of rads, alone, are less than those of rads while getting chemo. All of us, here, are well-acquainted with just about all the side-effects possible. And, compared to the alternative of a C return and disfiguring surgery, and/or D, it would seem those side-effects are not so great.

kcass

Agatha

John oldtmr said:

Radiation
Agatha, Just got back on and was reading your posts. As far as the teeth the fluoride trays are more for after. I shouldn't be giving advice on this 'cause I'm not doing as I'm supposed to. My dentist said to use them every couple of days to prevent cavities and the oncologist said the same thing. As young as you are get a prescription for the fluoride and use it. Also my dentist said that they now also do a root canal then grind the tooth down and leave it there and let the gum grow over it.
As far as the radiation goes I would definitely have it. I had 6wks. 2 a day for the last 7 days. Chem once a wk. but not the bad stuff. It made the tumor more susceptible to the radiation. Also had Amophostine shot before each treatment to help with saliva. I had base of tongue tumor that had started up the neck and 1 lymph node. I was very lucky as they got it all with the radiation. I've been cancer free for 16mos.
Hang in there and don't wait!!
John

Radiation
Hi John,

Yes, I will definitely do the flouride trays. I am really glad to hear about the root canal and having the gum grow over it. I hope I won't have to worry about it, but it's good to hear that there are some options if it comes to that.
I am not having the Amophostine shot, though. I should ask the oncologist about that.
Glad to hear about how it all turned out for you. Thanks a lot for all the tips.

All the best,
Agatha

Agatha

Skiffin16 said:

Live like the way I did....
Maybe you'll live life better than you did before.

In my case an many others, this has enlightened me. Things that used to be a big deal to me, aren't so much now. Things that weren't as important to me then, tend to be more important to me now.

In realitiy, I'm 18+ months out now, and honestly, other than some fears of recurrence, I pretty much live life as I did before, only wiser and more educated. This is not entirely about you....it also affects your spouce, children, and family that you also have to consider how your choices will impact.

It hasn't beaten me, maybe slapped me around a litlle, but I am still me. I can eat nearly anything that I want and without compromise. Yes, I have a few bugs here and there from it, but I do also from several things I've encountered during my life.

I have always said those things that make me unique are what gives me chracter. It's what separates me from others. It's who I am......

I see people a lot younger than I am, that are dealing with much more physical hardships than I'm going through. They do it, they adapt, that's who they are, they accept that, deal with it, learn from it, and teach people like me.....

Best,
John

Live like the way I did....
Hi John,

I am hoping that once I am through treatment and I can focus more on my healing that I will feel the same way. I have always appreciated life, but it really is on a whole new level now.

It's great to hear that you're feeling positive and focussing on the stuff that really matters. That's exactly why I didn't just immediately stop radiation and I am continuing - because of my family. I am not married nor do I have children, but I have amazing parents, siblings, cousins, etc. who are in this fight with me and supportive in so many ways. My mother did not take the news very well at all when I was first diagnosed, and now to see how strong she is being for me, I know I owe to her, and to myself, that same strength if not more.

Thanks for your positive words. We all need that some times.

All the best,
Agatha

Agatha

Kent Cass said:

Agatha
This is C, Agatha. C only means one, bottom-line thing, in the end, if it is not done battle with by the carrier.

1. Do you have confidence in your Drs.? If yes, then you must lean towards their best advice. If not, then find another set of Drs.

2. The rule-of-thumb for H&N, which has a good chance for survival, is to error on the side of the aggressive. One must be cautious with all test results, but one must accept the results of Biopsy. If it was C, then the logical best route is overkill on the C.

3. The side-effects of rads, alone, are less than those of rads while getting chemo. All of us, here, are well-acquainted with just about all the side-effects possible. And, compared to the alternative of a C return and disfiguring surgery, and/or D, it would seem those side-effects are not so great.

kcass

Bigger Picture
Thanks, kcass. We really do have to focus on the bigger picture.

Skiffin16

Agatha said:

Live like the way I did....
Hi John,

I am hoping that once I am through treatment and I can focus more on my healing that I will feel the same way. I have always appreciated life, but it really is on a whole new level now.

It's great to hear that you're feeling positive and focussing on the stuff that really matters. That's exactly why I didn't just immediately stop radiation and I am continuing - because of my family. I am not married nor do I have children, but I have amazing parents, siblings, cousins, etc. who are in this fight with me and supportive in so many ways. My mother did not take the news very well at all when I was first diagnosed, and now to see how strong she is being for me, I know I owe to her, and to myself, that same strength if not more.

Thanks for your positive words. We all need that some times.

All the best,
Agatha

Merry Christmas
Merry Christmas Agatha.....

stevenl

Agatha said:

Live like the way I did....
Hi John,

I am hoping that once I am through treatment and I can focus more on my healing that I will feel the same way. I have always appreciated life, but it really is on a whole new level now.

It's great to hear that you're feeling positive and focussing on the stuff that really matters. That's exactly why I didn't just immediately stop radiation and I am continuing - because of my family. I am not married nor do I have children, but I have amazing parents, siblings, cousins, etc. who are in this fight with me and supportive in so many ways. My mother did not take the news very well at all when I was first diagnosed, and now to see how strong she is being for me, I know I owe to her, and to myself, that same strength if not more.

Thanks for your positive words. We all need that some times.

All the best,
Agatha

You'll do fine I just know it
Hi Agatha,

About a year ago I learned that I had SCC Stage 4 in my right tonsil, with mets to lymph nodes. The tonsil was the primary. I had all the procedures everyone else has talked about, radical neck dissection, tonsillectomy, 7 weeks of chemo and radiation concurrently.

I smoked for 40 years and drank for about 35. I am 54 and I understand that at your age and with the reports you have gotten, your being skeptical. All I can say is go all out to try and kill this beast all the way.

The rads and chemo weren't too hard on me at all. On some they are really hard. I never was burned and never had any sores or anything. Not saying it was a walk in the park but, it was very doable.

I am now doing very good, just a scan and got the all clear and life is getting better every day. And yes, while I am a little different I AM ALIVE. So hang tough girl and you will do fine I JUST KNOW IT!!!

Best,
Steve

Agatha

stevenl said:

You'll do fine I just know it
Hi Agatha,

About a year ago I learned that I had SCC Stage 4 in my right tonsil, with mets to lymph nodes. The tonsil was the primary. I had all the procedures everyone else has talked about, radical neck dissection, tonsillectomy, 7 weeks of chemo and radiation concurrently.

I smoked for 40 years and drank for about 35. I am 54 and I understand that at your age and with the reports you have gotten, your being skeptical. All I can say is go all out to try and kill this beast all the way.

The rads and chemo weren't too hard on me at all. On some they are really hard. I never was burned and never had any sores or anything. Not saying it was a walk in the park but, it was very doable.

I am now doing very good, just a scan and got the all clear and life is getting better every day. And yes, while I am a little different I AM ALIVE. So hang tough girl and you will do fine I JUST KNOW IT!!!

Best,
Steve

Thanks!
Thanks for the positivity, Steve!

I am getting some of the side effects, unfortunately (mouth sores, skin getting a bit red and saliva issues), but hopefully it won't be too bad to get through the rest of it. I don't think I will ever really accept radiation and will always be skeptical, but I have been told that this is the best chance for me to never see it come back. I guess I was just hoping to hear about someone who had the same diagnosis, who didn't need radiation (which seems to be very unlikely). Wishful thinking.

It's good to hear that you are doing well. Take care and all the best.
Agatha

ekdennie

Agatha said:

Thanks!
Thanks for the positivity, Steve!

I am getting some of the side effects, unfortunately (mouth sores, skin getting a bit red and saliva issues), but hopefully it won't be too bad to get through the rest of it. I don't think I will ever really accept radiation and will always be skeptical, but I have been told that this is the best chance for me to never see it come back. I guess I was just hoping to hear about someone who had the same diagnosis, who didn't need radiation (which seems to be very unlikely). Wishful thinking.

It's good to hear that you are doing well. Take care and all the best.
Agatha

side effects
agatha, sounds like you have the same side effects that I had/have. I am still battling my skin issues...if I forget to apply fresh lotion then my face gets red again, but my doctor has said that I am recovering faster than she thought would be possible. wishing you the best with your treatment and I hope you recover and heal as fast as I am. I still have a long way to go, and I am having some issue with my mouthpiece, skin, and sores...but I am doing so much better than last week, which was better than the week before.
HUGS! and Happy New Year!
elizabeth

mswijiknyc

Agatha said:

I really hope it all turns
I really hope it all turns out well for your husband.

All the best.

not so much
when I wrote the original answer to your question, I thought there might be some kind of hope.

I was wrong. We ran out of time.

Please do not mess around.

Agatha

mswijiknyc said:

not so much
when I wrote the original answer to your question, I thought there might be some kind of hope.

I was wrong. We ran out of time.

Please do not mess around.

I'm sorry to hear this....
I am so sorry that this has happened. I cannot imagine how difficult this must be. My thoughts are with you.

Agatha

ekdennie said:

side effects
agatha, sounds like you have the same side effects that I had/have. I am still battling my skin issues...if I forget to apply fresh lotion then my face gets red again, but my doctor has said that I am recovering faster than she thought would be possible. wishing you the best with your treatment and I hope you recover and heal as fast as I am. I still have a long way to go, and I am having some issue with my mouthpiece, skin, and sores...but I am doing so much better than last week, which was better than the week before.
HUGS! and Happy New Year!
elizabeth

Side Effects
Elizabeth,

I'm glad to hear you are recovering well from treatment. My skin is getting pretty itchy and I have an opening in some skin on my neck, and I am hoping that doesn't get too much worse. I was told to put saline to that area, because lotion may just cause an infection. I hope each week continues to be better for you! Thanks for the wishes, I wish you the same.
Hugs and Happy New Year! Hoping 2011 brings better things our way!
Agatha

Hal61

Agatha said:

Side Effects
Elizabeth,

I'm glad to hear you are recovering well from treatment. My skin is getting pretty itchy and I have an opening in some skin on my neck, and I am hoping that doesn't get too much worse. I was told to put saline to that area, because lotion may just cause an infection. I hope each week continues to be better for you! Thanks for the wishes, I wish you the same.
Hugs and Happy New Year! Hoping 2011 brings better things our way!
Agatha

Symptoms suck
Hi Agatha, sorry to hear you are suffering from formication and funky skin. Your neck is, and will take a beating for awhile, but will heal. I'm seven months out of treatment and all the symptoms of immediate radiation are long past. It's hard, but important, to keep that in mind. They will go away, and later when you are cancer free, you can assess whether the treatment was worth it. "Formication" is itching all over, from the feeling that ants are crawling on you, as ants exude formic acid, which is that acrid "ant" smell you smell if you get close enough to ants to smell them. I digress, just for a break.

best, Hal