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tonsil cancer

Worried2
Posts: 1
Joined: Aug 2012

My husband was diagnosed with tonsil cancer but refuses to go through radiation and chemo because he has heard all of the horror stories behind some of them. I don't think i can bare to sit and watch him die. He is taking Shaklee vitamins and swears the tumor is shrinking in his neck.
Unfortunately i am a nurse and i see it getting bigger. He has not had any kind of scan done. I think he is afraid to.
He believes God will heal him without a doctor and i know God can, too but "Will He"? That is always the question. My husband has made peace with God and i envy his faith. I wish faith came that easy for me.
Worried2

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

God can heal, true. Remind your husband that God helps them who help themselves. He doesn't expect that he just sit back and do nothing. It's got to be hard to be in your position! You don't say how old your husband is or what kind of condition healthwise he is in. Chemo and radiation takes a lot out of you, that's true but it can take away all his problems once it's done. It's a decision only he can make but remind him of the devastation it can cause you and children or grandchildren if you have any. We are here for you if you need us. Take care.

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

To our slice of the internet. I too HAD tonsil cancer, I also take one of the
best natural suplements there is but I also had 33 radiation treatments I
have faith in God who has been with me through this ordeal. Once I was
diagnosed it was a matter of OK what do I have to do to survive this. The
treatment was no walk in the park but it wasn't as bad as I thought it would
be, mind you I only had rads, no chemo or surgery but I still have the side
effects from it. I thank God for helping me through it all and he is still with
me getting me back to a new normal life. I cannot make or tell your husband
what to do but I and all on this board will be in his corner and support him.

God bless
Tonsil dad,

Dan.

cathy4889
Posts: 10
Joined: Aug 2011

my husband was diagnosed about one year ago with tonsil cancer. Thank God he decided to fight it and went through radiation and erbitux (something like chemo). We are on the eve of his one year PET scan, and we are both happy we decided to fight this thing. I will keep you in my prayers that your husband wants to fight this, and that you will stay strong on the journey.

Skiffin16's picture
Skiffin16
Posts: 8062
Joined: Sep 2009

That was my Dx, treatment consisted of removing the tonsils, and a total of sixteen weeks of chemo (cisplatin, taxotere, 5FU and carboplatin)...the carboplatin was concurrent with 35 daily rads sessions...

While treatment wasn't the best time of my life, it was very doable.

Actually, I had no PEG and never got sick....I did lose my hair, loss taste and saliva...but all of that has returned...

Oh and I'm alive and doing well, I actually had very minimal side effects, and am pretty much back to the way I was post Tx...only a lot more knowledgeable about H&N cancer, LOL...

Ohhh, and all of that was over 3 1/2 years ago.

I can honestly say, that I don't think I would be here today if I hadn't had treatment, and if I hadn't put in the fight.

Hoping you hubby ralizes that it's not as bad as he might think...

Best,
John

tuffenuff's picture
tuffenuff
Posts: 273
Joined: May 2012

That's the real problem with trying to learn all you can when something happens. People come out in DROVES to talk about how horrible something was but you rarely hear success stories. I recall a study being done once about customer service and, on average, if someone had bad service they told 10 people. If they had good service the average is 2. Same principle here. Plus, if you're doing great you might not want to come post and read all the stuff to remind you of what you're dealing with.

Blah blah blah... What I'm here to say is that the treatment is not fun but it's not always horrific. I am stage 4a tonsil. Just completed (yesterday) 35 rads. I just now started getting a bit of a sore throat and some mucus. Throat is alleviated with water and 1/2 lortab every 5 or 6 hours. Mucus is yucky but not as bad as most describe. My chemo never made me sick. I was tired and lost my sense of taste. I opted for the feeding tube because I could not force the tasteless food down my throat

All in all, every bit of it will be worth it because I want to live out the rest of my life. Who knows how long that will be? none of us do. I just know I wasn't ready to make a decision that would shorten it unnecessarily. You're husband is scared and in denial. That's understandable. I hope he opens his eyes soon and sees that the inconvenience and discomfort will be worth it.

longtermsurvivor's picture
longtermsurvivor
Posts: 1780
Joined: Mar 2010

it is a choice he has to make. No one else can make it for him. And refusal of treatment is certainly an option. We all see these things differently. Some of us pray for cure. Some of us pray for acceptance. Neither of these assumes that we refuse treatment. That is actually a separate thing. Perhaps a visit to his minister would help himsort this out. It would be tragic if denial were masquerading as faith.

Mybest to you both

Pat

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

faith in god is one thing...faith in vitamins another. has god expressed that vitamins are His works, and erbitux and IMRT not? sorry to be blunt, but I just don't fathom that application of faith.

I've just been through rads and erbitux treatments for tonsil cancer myself, and the horror stories are way overblown. lots of indignities, testing of patience, and annoying side-effects. but nothing that remotely compares to the horrors of wasting away and dying of throat cancer.
God bless you both.

Tim6003's picture
Tim6003
Posts: 1490
Joined: Nov 2011

but I would not be honest if I did not say the treatments (for me) were very tough. But I did survive them.

I too have faith, but I also believe I learned something from my ordeal. As crazy as this may sound, I love my wife now more than I ever thought I could. I hurt for people now more than I ever did (and I was never one to not hurt for people, but it's different now, I feel it is more like a "burden" for others and in particular people with cancer) I pray more often now than I ever did and I find time to spend with my bible, prayer, the wife and kids (and I still work a lot of hours), but I make that time with family happen.

It's not that God can't heal us and prevent us from ever suffering, but sometimes suffering refines us, makes us stronger and dare I say humbles us to rely on Him more than ever when all else seems hopeless.

When my 13 year old daughter asked me last November "why us Dad?" referring to how the past year my Dad (to her he was known as Pa), my only brother ( to her known as Uncle Dennis) had died of cancer (Leukemia and brain tumor)and now I was diagnosed with stage III cancer...all I could do was tell her I did not know why, but I refuse to ask why us and I will trust the Lord knows what He is doing and that He still loves me and our family even though we don't understand what is going on and even if I die from this.

Flash forward 6 months from that conversation (April) when I stood in front of the church and shared my journey, looking at starting a local thrift store to help oral cancer patients, started a prayer chain for the sick. The church collected over $1,000 (and it's not a big church in our small town) and I had countless people come up to me and say "thank you" for sharing your story, you have given us a fresh look we needed.

I remember looking at my daughter and saying "now maybe we know why honey". Maybe I had to go through what I did to understand and to help others as well as build my own faith while at it.

I made sure anybody who came up to me at church and said thank you for sharing or thank you for what I am doing, that I gave the Lord all the credit for anything I am or will do in the future...because before I got sick I would have never understood or had the determination or even strength to do it.

I still have side affects. I still struggle with things I don't understand and I still tell the Lord I want Him to take care of my wife and kids in the future whether I am there or not (and that makes me feel good to tell Him that, because I know He can and will).

So we can't tell your husband what to do. We support you and him in all of this. I pray he is open to hear and learn what it is the Lord would want him to learn / experience through all of this.

Best,

Tim

hwt's picture
hwt
Posts: 1882
Joined: Jun 2012

In every crisis there is a fear. What specifically is he afraid of?
Rads and chemo? Is it pleasant, no, but not everyone has every side effect. I can only speak for myself, I never got nauseated, they have lots of good meds to prevent that now. The actual radiation tx only takes about 10 minutes a day. I was very tired and slept allot. I had very bad sores on my lips that were painful. My chemo doses had to be cut in half and given weekly which worked well for me. When I got my 1st scan, post treatment, and it was free of cancer, the side effects seemed insignificant. I pray that God gives your husband the strength to make the best decision for himself and his family.

CivilMatt's picture
CivilMatt
Posts: 2907
Joined: May 2012

Hi worried2,

I had all three, surgery, radiation and chemo and I am pretty sure it was easier to get through than no treatment at all.

I vote for you to take on this adversary and not give up.

Best,

Matt

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

I really must ask you to ask your husband if he did, or did not, get C? You say he has C. Now, we are always under the care of the Lord, or so those of us who believe in the Lord want to think. And yet, he, like I, came down with C while under the care of the Lord. Right? So, he's trusting the Lord to rid him of the C? Oh, and is his logic gonna be that the Lord is testing him? Do you have any idea how egotistical that really is? He believes he is so great a person in the eyes of the Lord that the Lord is gonna do the miracle thing just for him? Hmmm...Please just ask him if he did or did not come down with the C while under the care of the Lord.

As for his having heard about the horror stories of H&N, and maybe that's why he doesn't wanna go thru treatment- sounds like it's time for him to man-up. H&N is a tough one for almost all of us, depending on the C and where all it is, and the course of treatment, but all of us have made it thru okay. This is 2012, and H&N tx has been around awhile, AND it is the Drs job to not only get rid of the C, but also to make the treatment tolerable for the Patient. Yes, it can get rough, but that's just the way it is with C, and the vast majority will tell you that their treatment was tolerable, and the results were well worth the treatment experience. Life for some of us has gotten back to the way it was.

And perhaps most of all- you might wanna clue him in on what it is like to die from H&N. It does get very ugly.

I hope you take this post in the true spirit in which I write it- hoping it will help you to convince your husband to bite the bullet and go thru treatment. And, please keep us informed as to what's what along those lines, and etc., etc.

kcass

boardwalkgirl
Posts: 263
Joined: Jun 2012

I pray you and your husband will come to a decision on this together. Though it was me that had to go thru the surgery, chemo and radiation, my husband suffered thru each thing with me and some days I think it was harder on him then me. I knew how I felt, he didn't really and couldn't do anything to fix it. I read everything I could on the internet and even read a book written by a local attorney who had been thru it himself when I got my diagnosis. Every one kept telling me to quit but I wanted to know as much as possible. I was prepared for the very worse and was happy when it wasn't as bad as I had prepared for. Don't take me wrong, it is tough every day but he can get thru it. I just finished my treatments Friday and now am in the healing mode. I can tell you my faith in God has grown in the past couple months. I pray a lot more and thank God a lot more. I don't question why me, because I have known a lot of very good people who have fought cancer including my dad who lost his battle and I know God doesn't pick on certain people. I think I am a stronger person today and I look at things a whole lot different. Good luck to you and your husband and I truly hope that he lets you help him make this decision because it truly should be a joint decision.

fisrpotpe's picture
fisrpotpe
Posts: 1330
Joined: Aug 2010

As has been said several times, Faith in God is good and most important.

I would share with your husband that God created the Doctors and research and engineers all to help treat and win the war against cancer. Radiation and chemo may not be the road he wants to go down for sure but it is a road most all of us here have gone down and survived. If I can survive I know he can.

Treatments, Doctor's and Nurses with Caregivers are the Ultimate Blessing for God!

John

osmotar's picture
osmotar
Posts: 953
Joined: Jul 2011

I was diagnosed last July with stage IV A scc of my rt tonsil
I went to my ent only because of a small lump on the rt side of my neck , had no clue about the tonsil. I was referred to my onco , started chemo Aug 8th , cisplatin, taxatore and a 5 fu pump. I had 1 all day session every 21 days for 3 months , then radiation started on Nov 1 every day for 7.5 weeks plus 1 weekly carboplatin. I was fortunate I didn't have some of the serious complications you will read others have or had. Today 8 months later I am eating well , most taste has returned. I went into this journey with the loving support of a great family and the attitude that I was going to come out the other end just fine. Would I do it again yes I would I put my trust and ultimately my life into the hands of these people. While each of us is different and act /react differently is it difficult yes... Is it doable yes. Faith is a wonderful thing and there are miracles but tell your husband to really think about the choices he makes for himself and ultimately you and your family. I know you don't know me from Adam but if your husband would like to speak to me send me a pm MSG here and I can forward contact info.

Linda

jim and i's picture
jim and i
Posts: 1597
Joined: May 2011

A lot of good advice here but ultimately as was said before the decision is his and his alone. My husband had stage four tongue cancer, went through rads and chemo, hd some bad side effects but came out the other side. Now the cancer in his tongue and lymph nodes is gone but he has lung cancer. Only option is erbitux or nothing, he chose nothing. Even his oncologist said the chemo did not work so why go through it again. He said the treatment would not cure, only prolong life, but what kind of life? You did not say if your husband talked to an oncologist about suggested treatment and prognosis. That would have a big bearing on the decision. I, as a pastor, witnessed cancer patients who suffered through treatment for their families sake who suffered so much. I recommend that you both talk to the doctors together and your pastor, then pray together and ask God to reveal the right decision to your husband. Also ask God to give you the strength to live with tht decision. If you love your husband you do not want him to suffer. Your husband lso needs to know that the not doing anything has its own suffering for him and thge family. My pryers are with you both. PM me if you need to talk and I will send you my phone number.

God Bless

tommyodavey's picture
tommyodavey
Posts: 353
Joined: Nov 2011

Is it not worse to die from oral cancer than it is to be treated for it? That is why we don't encourage people to do research online. It is best to come here and get the real facts of survival.

This site is called Cancer SURVIVOR Network. Emphasis on the survival part. Is there anyway to get him to come here and read our stories for himself? That may change his mind.

I'm so sorry you are heading into the storm. We all pray that he will come around and seek treatment and be cured.

Please post as often as you need to.

Tommy

katenorwood
Posts: 1818
Joined: May 2012

Worried2,
Hello, it is very frustrating when a loved one refuses to seek treatment for a life altering and deadly disease. My brother is one of those. At first I was so angered at him. Maybe still am. I believe in God, and I also believe in alternative options. But saying this I am fighting to find a way to keep my cancer in check, if not to get it cured. That means to trust in whatever treatments are available, and say a prayer that God guides my medical proffessionals to do the very best for me. I think that you need to respect his fears because they are very real to him. But, he also needs to hear first hand from survivors that have the same dx, and came through the other side of it with NED. Hearing their stories of hope and their fight might change his opinion. I wish your family the very best, and am hoping your husband hears you on this issue. Katie

ditto1
Posts: 630
Joined: Mar 2012

tx I found this website and I to asked if the fight was worth it. I was scared of the journey that I knew was before me. I had extra concerns for my physical needs, I had polio and right leg amuputee, I accepted the life and body God has blessed me with, for he has also blessed me with so much in my life. But I prayed that he keep my arms and leg in tact and my strength to get thru this. I use both a wheelchair and crutches. Well God has answered my prayers, 1st I have driven myself with my caretakers to all treatments, 2 Cisplation Chemos, 30 RADS 5 more to go and 9 Erbitux 2 to go. I have Base of Tongue Stage 4. I was totally freaked over the MASK for RADS, but again the fear out weighed the reality, the Mask has been very tolerable for me, no meds necessary although many on this site were helped with some mild med assistance during RADS. Does this all suck, yes, I get frustrated at times (maybe to many times) have I posted these pains and frustrations, yes, most have on this site at one time or the other. My point is tell your husband to read our comments or rely them to him. God is great but take advantage of Gods helpers and likely your Husband will be proven right that with God and the Doctors he will be healed. So tell him to jump on our Famous H and C Bus, its full of fun people fighting to just reach its destination. Tell him we will hold his seat. God Bless you both

Isign4Him
Posts: 34
Joined: Jul 2012

Actually God does not help those who help themselves, he helps those that are helpless and depend on Him. If your husbands faith is as strong as you say then why wouldn't he trust God to see him through the treatment. I was diagnosed with scc of the left tonsil and it has spread to the nodes on both sides of my neck. I am preparing for my treatment, I had a port put in and will have a peg placement tomorrow and my "scorching earth tx" will start on the 13 of August. God has a plan for everything, I trust God implicitly, if God uses my testimony to lead one person to Christ then who am I to refuse, real faith is trusting God to see you through the tough times, all of us are to be "tested by fire" I have read the same bad things as well as the good, my prayer is that God will give me the strength and courage to come out on the other side a better man, a better witness and giving all the glory to God. I am stage 4. Tell your husband he has a responsibility to not only his wife but to all of the other people that his loss will effect, maybe someone in that group needs to see his faith and trust in God. Tell him to trust God with his fear and that many here will pray for him and be here to encourage him and support him including myself.

in Christ , Kevin

fisrpotpe's picture
fisrpotpe
Posts: 1330
Joined: Aug 2010

if your husband will not come to site, try printing out some things and let him read them.

john

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