Can I risk not having radiation?

luv4lacrosse

fisrpotpe said:

Risk Reward
It's all about taking a risk and getting the reward.

I did the treatments both radiation and chemo almost 15 years ago, the treatments and the small things to help with pain and reduce the side effects are much better today than in Jan. of 1996.

I have enjoyed having the new normal for the last 14 years, 11 months, 18 days post diagnosed.

Welcome to CSN, the posts for all are from people who care about all others that are troubled with cancer.

HERE'S TO YOU
Nothing better than seeing longevity at work.

You make sure you thoroughly enjoy the "new normal" you deserve it.

It is very inspiring to see long term survivors chime in on the site.

BEST!!!

Mike

Hal61

I empathize
Hi Agatha, I know just how you feel. I was recently advised by my medical onc to undergo another round of chemo. I've already had 35 rads, cysplatin, and partial neck dissection. Today I suffer from disabling tinnitus--so keep track of hearing loss if you have chemo, and let your doc know so they can change the mixture. Anyway, my rad onc and ENT didn't advise or not advise further chemo. My team will go to great lengths not to disagree. My medical onc said it was a real longshot that further chemo would be needed, 100 to 1, but he decided that that 1% was enough to advise me to have it. He said there was no data in a case like mine that further chemo changed my chances, and that I currently have a "reasonable certainty" that I'm "cured"--cured being his word, and I don't deal with that idea, NED is good enough.
So I said no. I don't want to be sick anymore and risk more permanent side effects on a very outside chance.

But, that's after 35 rads, chemo, and a neck dissection. So I understand that there are times when you have to make your own decision. I hope I don't live to regret my decision, but there wasn't enough data or consensus to convice me further chemo was needed. Your case is not so hard to decide. By now you're into your third week, and it's a harrowing road while you're on it, but you're closing on half in, if you're receiving 35, so that in itself is reason to see it through. You're already almost halfway home, and the side effects will come, whether you keep it up or not. If they are asking you to sign papers releasing them from liability, then you can be sure they feel that radiation is needed. Just hang in, quality of life is a long-term issue, and shouldn't be decided on short term discomfort or depression. Finish and give yourself time to heal.

best, Hal

Agatha

susan0803 said:

agree yes to radiation
Hi Agatha. Sorry to hear you are on this board.

In my opinion, I would go with the radiation. The fact that there was just a mets to lymph nodes, and they were able to remove a lot with surgery, then radiation you may have may be lower rads and to less of an area, thereby minimizing the side affects for you. My husband got through with the 33 rounds of radiation in November. I think he is doing pretty well considering and the side affects from the radiation (mostly loss of saliva for him at this point) seems very managable. The long term side affect from what i understand may be thyroid, which also is very manageable with synthroid pills.

hope this helps you make a decision. good luck.
suzanne

Hi Suzanne,
I am hoping that
Hi Suzanne,

I am hoping that there will be minimal effect, and I know the radiation oncologist is trying to ensure at least one of my salivary glands is not affected. I am worried about the thyroid, but mostly about the teeth problems I may have in the future. In particular, I am worried about the chances of developing something called osteoradionecrosis, if I ever need to have an extraction.

Thanks for your input and I hope your husband continues to do well. Take care.

Agatha

luv4lacrosse said:

POSITIVITY
Hi Agatha, you already do have the positive attitude, it is just buried beneath the fear of having cancer. Believe me when I say this, not every day for me looks to be as upbeat as I may appear. I have had my "woe is me" or my "i am scared shitless" and do not know what to do.

Let us help, it will get better.Please believe in your ability to want to get better, you may not know exactly how this will happen yet, but it will happen. Personally I think you should elect to let the Doc's do the radiation and chemo if needed. It will be hard, but you will come out the other end OK.

Please PM me if you ever want to just dump on someone, it is ok.

BEST!!

Mike

Thanks, Mike. I really am
Thanks, Mike. I really am letting fear, and at this point anger, take over. It is hard to imagine how things will get better, but I have to believe this. I see how much this is affecting the ones who care about me so much, and I know it hurts them even more when I debate over whether or not to continue with radiation. I not only have to do it for me, but for them.

Thanks for the offer, I may just take you up on that!
Take care.

Agatha

MarkN_CT said:

I’m no expert, but I’ll
I’m no expert, but I’ll tell you of my experience.

In 2007, I was diagnosed with SCC on the side of my tongue. Started with a 2 spots of leukoplakia, but then a sore developed that wouldn’t go away. Laser surgery removed the leukoplakia, and the sore. Path result showed “abnormal cells”, but no cancer. The sore came back. A more radical surgery was performed where the side of my tongue was removed, going deeper into the tissue. This time, the biopsy was positive for cancer. The surgeon was not comfortable with the margins. He consulted with a colleague, and it was decided that instead of radiation therapy, it would be best to remove more tissue just to be sure. So, a third surgery to remove more tissue was performed.

Two and a half years of follow-ups, and the sore re-appeared. A biopsy showed cancer again, same side of the tongue where it appeared before. I was then sent to Yale New Haven for a consult. I was advised that the best course of action, since this was a re-occurrence was surgery (again!) chemo, and radiation. Final result was Stage IVa SCC, two lymph nodes involved, no mets. Chemo and rads were no picnic, but in my case it’s the course of action that gives me the best chance for survival

I am now four months post-treatment. I can eat most anything, taste is almost where it should be, and my strength has returned. I’m still a bit skinny, but I could afford to lose some weight anyway!

I guess the point to my rambling is this: Maybe if I had the radiation treatment back in 2007, I wouldn’t have had to go through what I went through this past summer. “Maybe” is a big word in this context. Hindsight being 20/20, I would have opted for the radiation three years ago.

I feel confident that the cancer was removed, and the chemo and radiation mopped up any stray beasties that may have been left behind. Please don’t take my story as gospel. Do research, get information, hang out in this forum, and absorb everything you can. Then make a decision.
Good luck, and God bless.
Mark

Hi Mark,
Thanks for sharing
Hi Mark,

Thanks for sharing your experience. I am sorry to hear about all you had to go through. Going through it once is bad enough, I can only imagine how hard it was to have to go through three surgeries, and then radiation and chemo.

I am so glad to hear you are feeling better post-treatment. I had to have a gtube put in because they said I can't afford to lose any weight, so I have the opposite problem!

Hindsight would be a wonderful thing, but I guess all we can have is trust and faith.

I don't take your story as gospel at all. You, and so many others on this site, sound like such strong people. It helps to talk to others who know what it's like. As much as I have great family and friends, I still feel alone in it.
Thanks again, best of luck and God bless to you as well.

Agatha

fisrpotpe said:

Risk Reward
It's all about taking a risk and getting the reward.

I did the treatments both radiation and chemo almost 15 years ago, the treatments and the small things to help with pain and reduce the side effects are much better today than in Jan. of 1996.

I have enjoyed having the new normal for the last 14 years, 11 months, 18 days post diagnosed.

Welcome to CSN, the posts for all are from people who care about all others that are troubled with cancer.

Thank you, fisrpotpe. It is
Thank you, fisrpotpe. It is great to hear you are enjoying your "new normal life". That is a great way to put it, since all I can focus on is that my life will never be the same or "normal" again.
All the best.

Agatha

mixleader said:

No Radiation
Hi, Agatha. I went through this same decision process this year. I had surgery to remove my right parotid gland and 9 lymph nodes. The gland was malignant, but the lymph nodes were clean. My surgeon said the margins were clean on the salivary gland excision. However, the margin was very, very thin and he told me I needed to have radiation in case some of the cells had been missed. I agonized over this decision. I remember asking myself why I should subject myself to the unknown of radiation if all of the cancer had been removed? I remember being very afraid of the side effects of radiation and I nearly said 'no'. However, after careful consideration (and some coaching by my beloved wife), I conceded that it was best to not take a chance with a decision that could be so important to my life. If I was wrong and the cancer started growing someplace else, it could be much, much worse than the original cancer. So, I decided in favor of the radiation and I endured it this past summer. I was very much afraid as I went through the treatments that something terrible was going to hit me, but I managed to get through with only moderate side effects. Today, I am NED and doing just fine. Yes, this is indeed a tough decision, but I trusted in my doctors.

Roger

Hi Roger,
I am asking myself
Hi Roger,

I am asking myself the very same thing. Why do I have to do radiation when the surgeon removed more tongue to be on the safe side, the margins were all clear, and only 2 of 37 lymph nodes were affected, which had not spread? These decisions are so hard, and I know a lot of people look at me as though I am very irrational to even consider not continuing with radiation. Actually, my doctor was so upset with me, and said he would make me sign a paper stating that he advised against not getting radiation. I know they mean well for me, and I appreciate how well the surgery went.
I am glad to hear you got through treatment and are doing well. Thanks for sharing your experience, it definitely gives me insight into my own.
All the best.

MarineE5

Great replies
Agatha,

You can see that you have come to the right place for your questions. You have been given some great replies. I was in the same boat as you 6 years ago. Had part of my tongue removed and had radiation. Chemo was to be a safety net in the case the cancer came back after the radiation.

Side effects are for me, no saliva, yes, this is one of the big ones for many of us. I see that you mentioned teaching. Talking with no saliva is a chore to say the least. There are ways around this issue. I found that if I chew gum, I am able to have a conversation and need to take a sip of water once in a while during a prolonged talk.

Some people have had a lot of success with accupuncture. I did try it and it didn't work for me, but another patient that I know was able to get his saliva back after just 2 appointments, pretty darn good in my mind.

Thyroid, this too is an issue. I was warned about it during radiation. Told to have my TSH levels checked each blood work and my thyroid has finally acted up and I am now taking some med's to figure out my dosage.

Fatigue, radiation will cause fatigue for you now and the near future. My Radiation Oncologist mentioned that it could be an issue for up to one year. I found that it was longer then that for me. Others recover quicker, I would say age could be a factor, I'm in my 60's now, but the thyroid med's seem to be working and I'll find out tomorrow if the dosage is correct now.

Finally, it only takes one stinking cancer cell to start all this over again, you are in week 3 and you might as well complete the job that you started. I know that after the surgery and recovery, I wanted to beat this beast once and for all. We are here for you, we have traveled this path and as you can see, we made it, so will you. We'll be here to help you get to the finish line...

My Best to You and Everyone Here

Agatha

ekdennie said:

type of cancer
Agatha, it is very important that you ask one of your doctors what cancer you have beyond tongue cancer. could it be squamous cell carcinoma? mine was mucoepidermoid carcinoma (rare salivary gland tumor).
since you have a moderately differentiated tumor, it would be recommended that you have radiation. that usually means that the cells within your tumor do not look normal nor are they at the stage where they would be spreading rapidly. your cells would be somewhere in between.
I understand that you won't like to hear this, but most side effects are temporary. if you quit the radiation, then you are letting the cancer win, if there are any cells left...which is often the case. yes you had a devastating surgery and you are still coming to terms with it, but if you quit now and the cancer comes back and you have to have an even more dramatic surgery or if they can not offer you a cure, how would you feel then? Your doctors would not suggest radiation just because, and since they have talked about chemo as well, that means that they really want to get rid of it. it means they don't feel the surgery alone was enough based on the type of tumor it was, not just the stage of the tumor.
a lot of people who have head and neck cancers need to seek counseling to help get through this time. you are not alone in feeling defeated, but if you try to look at it in a different way...the way I looked at it was the surgery was the eviction notice for my tumor, but the radiation was the deep cleaning that needed to be done to make sure the "tenant" (the tumor) didn't leave something behind. it helped me not get too down during treatment.
try to stay strong and think about a future where you not only have kids, but you have grandkids. you never know, this radiation treatment could mean that you will be able to watch your future children have children. without the treatment the likelihood that you could watch that same scene goes dramatically down...regardless of the type of tumor you have.
another hug coming your way!

Yes, it was squamous cell
Yes, it was squamous cell carcinoma. There are so many words thrown at you, I completely forgot when they told me after I got back my biopsy results.

Thanks a lot for taking the time to explain that to me. I know we shouldn't ask this, but how do these rare things happen? No smoking for either of us, and yours was so rare. Sorry, sometimes it just gets me thinking.
The surgery and the hospital stay for nearly two weeks were pretty overwhelming. Thanks for trying to talk some sense into me. They did say that right now radiation is being done for a cure, and if it does come back it will be worse and they won't be able to cure me.
They have also suggested that I get some counseling through the hospital. That is a good way of looking at the surgery and radiation. I need to look at it as really giving me that deep cleaning. I am trying not to get down, but as I go through them it gets harder.
I do like that vision of kids and grandkids. I truly hope to see that one day. I am currently in a relationship and I am surprised that he has stuck around after all this. I really do see myself having a future with him, and hope that I can see this happen.
Thanks again for taking the time to write. And thanks for the hug! Right back at you!

Skiffin16

Agatha said:

John,I realize they seem
John,

I realize they seem like a few side effects, but I just feel after the surgery and everything that has happened I have more to worry about after radiation then just my speech. I understand that I should feel grateful if radiation kills off anything bad that is left and I get to be alive. The real issue isn't my doctor, it's about my quality of life after all this is said and done.

I don't take offense, I see where you are coming from. I just have this hope in me that radiation isn't needed. It is quite likely I am in denial.

I can appreciate that
But at the same time, we or most of us here have, are, or will go through all of those things you mention, or a portion of them.

For me at least, it isn't really that bad, yes, some of it is definitley a PITA, but it's still worth it.

I'm 18+ months post treatment for STG III SCC Tonsil Cancer, HPV+ with a lymph node as a secondary. I had nine weeks of chemo, then an aditional seven weeks of chemo/daily rads.

It all stinks for sure, but I want to hit it with everything I'm healthy enough to withstand. I can deal with the other crap later, keep me alive first.

I have regained nearly 90%+ of both salivary function and taste. Yes I an everyone else here have the potential of having tooth extraction problems and possible hyperbarric chamber treatment to prevent infection from lack of blood flow to the jaw bone area.

Yes most of us will have thyroid problems which is usually easily treated with Synthroid or some equivalent.

I see positives...even if you weren't able to teach because of speech....you could teach ASL American Sign Language possibly (I know glass half full)....

Those are all just my thoughts, you will figure out what is best for you...you are the only one that can do that.

BTW, you can inquire about Amifostine in helping to retain or regain some of the salivary function. I feel it helped me in the long run.

My best to you and your decisions....
John

Agatha

Hal61 said:

I empathize
Hi Agatha, I know just how you feel. I was recently advised by my medical onc to undergo another round of chemo. I've already had 35 rads, cysplatin, and partial neck dissection. Today I suffer from disabling tinnitus--so keep track of hearing loss if you have chemo, and let your doc know so they can change the mixture. Anyway, my rad onc and ENT didn't advise or not advise further chemo. My team will go to great lengths not to disagree. My medical onc said it was a real longshot that further chemo would be needed, 100 to 1, but he decided that that 1% was enough to advise me to have it. He said there was no data in a case like mine that further chemo changed my chances, and that I currently have a "reasonable certainty" that I'm "cured"--cured being his word, and I don't deal with that idea, NED is good enough.
So I said no. I don't want to be sick anymore and risk more permanent side effects on a very outside chance.

But, that's after 35 rads, chemo, and a neck dissection. So I understand that there are times when you have to make your own decision. I hope I don't live to regret my decision, but there wasn't enough data or consensus to convice me further chemo was needed. Your case is not so hard to decide. By now you're into your third week, and it's a harrowing road while you're on it, but you're closing on half in, if you're receiving 35, so that in itself is reason to see it through. You're already almost halfway home, and the side effects will come, whether you keep it up or not. If they are asking you to sign papers releasing them from liability, then you can be sure they feel that radiation is needed. Just hang in, quality of life is a long-term issue, and shouldn't be decided on short term discomfort or depression. Finish and give yourself time to heal.

best, Hal

Hi Hal,
I am sorry to hear
Hi Hal,

I am sorry to hear about your experience. It really is hard. I hope the tinnitus subsides for you. After all treatment is done, I will have 30 rads, partial neck dissection where 37 lymph nodes were removed and half of my tongue removed. Chemo was an option, but it was also a small increase to improve my chances. The surgeon, radiation oncologist and chemo doctor were all in agreement that radiation may very well be enough for my situation (they wouldn't completely rule it out, but it wasn't an absolute must). All of the effects are difficult, but it was really hard for me to digest the idea that I would not be able to have children of my own.

I really hope you never regret your decision. That's how I felt about chemo, if it does come back will people just simply think I asked for it by not getting chemo? I ultimately have to feel at peace with that decision, but as you can see with my recent questioning of radiation, it's so very hard to be at peace with it. If only we knew everything will turn out okay and it won't come back into our lives.

Thanks, Hal. My emotions are all over the place and I may be getting slightly depressed, which is why I am trying to make the best decision. I guess all we can do is hope for the best.

All the best.

Agatha

MarineE5 said:

Great replies
Agatha,

You can see that you have come to the right place for your questions. You have been given some great replies. I was in the same boat as you 6 years ago. Had part of my tongue removed and had radiation. Chemo was to be a safety net in the case the cancer came back after the radiation.

Side effects are for me, no saliva, yes, this is one of the big ones for many of us. I see that you mentioned teaching. Talking with no saliva is a chore to say the least. There are ways around this issue. I found that if I chew gum, I am able to have a conversation and need to take a sip of water once in a while during a prolonged talk.

Some people have had a lot of success with accupuncture. I did try it and it didn't work for me, but another patient that I know was able to get his saliva back after just 2 appointments, pretty darn good in my mind.

Thyroid, this too is an issue. I was warned about it during radiation. Told to have my TSH levels checked each blood work and my thyroid has finally acted up and I am now taking some med's to figure out my dosage.

Fatigue, radiation will cause fatigue for you now and the near future. My Radiation Oncologist mentioned that it could be an issue for up to one year. I found that it was longer then that for me. Others recover quicker, I would say age could be a factor, I'm in my 60's now, but the thyroid med's seem to be working and I'll find out tomorrow if the dosage is correct now.

Finally, it only takes one stinking cancer cell to start all this over again, you are in week 3 and you might as well complete the job that you started. I know that after the surgery and recovery, I wanted to beat this beast once and for all. We are here for you, we have traveled this path and as you can see, we made it, so will you. We'll be here to help you get to the finish line...

My Best to You and Everyone Here

Thanks for sharing your
Thanks for sharing your experience, MarineE5. I am really not looking forward to the effects, but I guess after the great advice and reasoning I have heard from everyone here, it would be rather foolish of me to not continue with radiation.

Thanks for the suggestion of accupuncture. I will look into that once I am done with treatment.

Wow, I never realized fatigue could last that long. It probably does vary with every person. I was even thinking of taking an online course starting about 3 weeks after my treatment is completed, since I am losing a year of teaching and I just started my career. Maybe I should rethink this.

Have you found that you gained a lot of weight because of your thyroid? Can this be easily treated so that you maintain your general weight or is a great deal of weight gain inevitable, even with the medication?

Thanks for your words of encouragement - it's greatly appreciated.

All the best.

MarineE5

Agatha said:

Thanks for sharing your
Thanks for sharing your experience, MarineE5. I am really not looking forward to the effects, but I guess after the great advice and reasoning I have heard from everyone here, it would be rather foolish of me to not continue with radiation.

Thanks for the suggestion of accupuncture. I will look into that once I am done with treatment.

Wow, I never realized fatigue could last that long. It probably does vary with every person. I was even thinking of taking an online course starting about 3 weeks after my treatment is completed, since I am losing a year of teaching and I just started my career. Maybe I should rethink this.

Have you found that you gained a lot of weight because of your thyroid? Can this be easily treated so that you maintain your general weight or is a great deal of weight gain inevitable, even with the medication?

Thanks for your words of encouragement - it's greatly appreciated.

All the best.

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

delnative

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

If it weren't for radiation ...
... I'd be dead now.
Of course, your mileage may vary ...

--Jim in Delaware

mswijiknyc

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?

kingcole42005

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

Skiffin16

Agatha said:

Yes, it was squamous cell
Yes, it was squamous cell carcinoma. There are so many words thrown at you, I completely forgot when they told me after I got back my biopsy results.

Thanks a lot for taking the time to explain that to me. I know we shouldn't ask this, but how do these rare things happen? No smoking for either of us, and yours was so rare. Sorry, sometimes it just gets me thinking.
The surgery and the hospital stay for nearly two weeks were pretty overwhelming. Thanks for trying to talk some sense into me. They did say that right now radiation is being done for a cure, and if it does come back it will be worse and they won't be able to cure me.
They have also suggested that I get some counseling through the hospital. That is a good way of looking at the surgery and radiation. I need to look at it as really giving me that deep cleaning. I am trying not to get down, but as I go through them it gets harder.
I do like that vision of kids and grandkids. I truly hope to see that one day. I am currently in a relationship and I am surprised that he has stuck around after all this. I really do see myself having a future with him, and hope that I can see this happen.
Thanks again for taking the time to write. And thanks for the hug! Right back at you!

Non-Smoker
I would have been willing to bet that the origin was HPV, surprised it wasn't... I'm a non-smoker, very light drinker, and HPV was the culprit.

There are many thoughts on exposure routes, incubation (for lack of better word) periods, etc....doesn't really matter. It is actually to a point of over taking tobacco/alcohol derived H&N Cancers. Less people using tobacco, different trends within society.

It's all partially luck of the draw and ability to fight off potentially infected cells. Most of the time we can fight off potentially infected cells. We all have cancerous or hpv type cells, usually our bodies fight them off. Sometimes either through a weakened immune system, or some other factor, we can't fight them off.

Anyways, stay positive and keep expanding your knowledge. You'll definitely become educated on the subject as I and all of the others on here have.

Best,
John

ekdennie

Agatha said:

Yes, it was squamous cell
Yes, it was squamous cell carcinoma. There are so many words thrown at you, I completely forgot when they told me after I got back my biopsy results.

Thanks a lot for taking the time to explain that to me. I know we shouldn't ask this, but how do these rare things happen? No smoking for either of us, and yours was so rare. Sorry, sometimes it just gets me thinking.
The surgery and the hospital stay for nearly two weeks were pretty overwhelming. Thanks for trying to talk some sense into me. They did say that right now radiation is being done for a cure, and if it does come back it will be worse and they won't be able to cure me.
They have also suggested that I get some counseling through the hospital. That is a good way of looking at the surgery and radiation. I need to look at it as really giving me that deep cleaning. I am trying not to get down, but as I go through them it gets harder.
I do like that vision of kids and grandkids. I truly hope to see that one day. I am currently in a relationship and I am surprised that he has stuck around after all this. I really do see myself having a future with him, and hope that I can see this happen.
Thanks again for taking the time to write. And thanks for the hug! Right back at you!

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

Agatha

Skiffin16 said:

Non-Smoker
I would have been willing to bet that the origin was HPV, surprised it wasn't... I'm a non-smoker, very light drinker, and HPV was the culprit.

There are many thoughts on exposure routes, incubation (for lack of better word) periods, etc....doesn't really matter. It is actually to a point of over taking tobacco/alcohol derived H&N Cancers. Less people using tobacco, different trends within society.

It's all partially luck of the draw and ability to fight off potentially infected cells. Most of the time we can fight off potentially infected cells. We all have cancerous or hpv type cells, usually our bodies fight them off. Sometimes either through a weakened immune system, or some other factor, we can't fight them off.

Anyways, stay positive and keep expanding your knowledge. You'll definitely become educated on the subject as I and all of the others on here have.

Best,
John

It really is luck of the draw....
I think now that they ruled out HPV it makes me wonder even more what caused this. I did go through a great deal of stress in the past 2 years. Maybe it was the stress and I am convinced a very sharp wisdom tooth that kept hitting my tongue (same side of the tumour).

I have read a lot, and it is frustrating that so little is known about HPV and it's role.
Thanks.
All the best.

Agatha

Skiffin16 said:

Non-Smoker
I would have been willing to bet that the origin was HPV, surprised it wasn't... I'm a non-smoker, very light drinker, and HPV was the culprit.

There are many thoughts on exposure routes, incubation (for lack of better word) periods, etc....doesn't really matter. It is actually to a point of over taking tobacco/alcohol derived H&N Cancers. Less people using tobacco, different trends within society.

It's all partially luck of the draw and ability to fight off potentially infected cells. Most of the time we can fight off potentially infected cells. We all have cancerous or hpv type cells, usually our bodies fight them off. Sometimes either through a weakened immune system, or some other factor, we can't fight them off.

Anyways, stay positive and keep expanding your knowledge. You'll definitely become educated on the subject as I and all of the others on here have.

Best,
John

It really is luck of the draw....
I think now that they ruled out HPV it makes me wonder even more what caused this. I did go through a great deal of stress in the past 2 years. Maybe it was the stress and I am convinced a very sharp wisdom tooth that kept hitting my tongue (same side of the tumour).

I have read a lot, and it is frustrating that so little is known about HPV and its role.
Thanks.
All the best.