Treatment a 3rd Time

I am a 44 year old father of four and I've been through head and neck cancer twice and Hodgkin's lymphoma once, so like all of you been through multiple radiation and chemo treatments. I've given up my normal voice for a strange one due to treatment, given up most of what I used to eat and I've given up my handsome young face for a face riddled with surgeries and post radiation scars. I know it's bad to think like this, but does anyone ever think about where to draw the line if you're face with going though it all over again?? If I went through it again I'd likely be fed through a tube with no voice and I'd have to get a trach put back in to breathe. Is it wrong to not get treatment??? I just don't know what I'd do if I'm faced with this again. Let's face it with all the radiation from two different rounds of radiation its a good chance that there will be another lymphoma down the road. I don't want to be a downer but these things cross my mind from time to time and I guess I'm just trying to be okay with it or prepare myself for it. I know I should just enjoy the now and the rest will take care of itself. I do have faith in God and I know He has prepared a place for me so im not afraid to leave, I just want to do the right thing and not be a coward and give up the fight, but don't we deserve some decent quality of life in the process?? I just wanted all of your opinions on this because all of you guys are awesome on here and so transparent and I definitely feel the love and caring in all of your replies...God bless you all :)

Comments

  • Viilik70
    Viilik70 Member Posts: 73
    Sorry

    sorry  this is John J :)

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    Treatments

    First off sorry to hear about all your treatments and certainly wish you the best.  As far as treatments, my husband was diagnosed in July 2010 with laryngeal cancer.  He underwent radiation, chemo and then surgery in March 2011.  He did great and in April of 2012 he decided to have a procedure done to help him talk.  Well to our surprise the head and neck specialist came out and told me he couldn't do the procedure because my husband had a second primary at the cervical of his esopahgus which is rare.  He ruled out surgery due to previous radiation and surgery and recommended more radiation and chemo and said the tumor was small and after a PET scan there was no spread.  So here we go again another 37 rounds of radiation and 7 chemo.  He was cleared for the follow up PET/CT scan 3 months later but then 4 months later the 2nd primary was back and much larger with spread to his right lung.  My husband said no more, only thing offerred was chemo and we were told upfront it would only prolong and could possibly hasten his time.  My husband just said enough was enough.  We are coming up on two years since that time.  He has been on a feeding tube since April 2012 and can't swallow anything.  He is declining daily and even now admits it.

    Now the big difference is that he was 73 and healthy when all this started and very active and loved camping and yard work, neither of which he can do now.  I'm sure that if he was your age when all this began, he could have kept fighting.  But this is your decision to make, and yours alone because you are the only who has to go thru the treatment. For those that haven't been thru treatment and even us as caregivers, we don't know what you are going thru.  As caregivers, we know to a degree but our bodies are not going thru the treatment.   When my husband told me enough was enough I didn't try to change his mind and neither did our sons because I told them it was their father's decision.  Our family, both sides, never knew what cancer was until about 12 years ago and since that time our families have been hit and hit hard with cancer, some survivors and others fighting the good fight but loosing, in fairly short periods of time.  Cancer is a beast and in the end for many it wins and for many others they win.  We are not very religious, but I have always felt that only one person knows when our time is up an that's the man upstairs and no one else.

    Wishing you peace and comfort -- Sharon

  • lornal
    lornal Member Posts: 428
    another cancer

    Hi John,

    I am 11 months out from my 2nd cancer.  I had tonsil cancer in 2007, with surgery, radiation, and chemo.

    A year ago, I had lost my voice, and had a feeding tube.  The doctors thought it was from radiation scar tissue, but it ended up being another cancer.  I was diagnosed one year ago.

    Now, I breath through my neck, talk with an electrolarynx, but I can eat anything I want to.

    And, I am probably healthier than I have been in a long long time.  I am not working full time yet - and might not ever get there, but I send time with my family, I work out - and am taking up new hobbies.  I did not need chemo or radiation this time.  Radiation was an option, but I chose to save it for the next time...

    But, yeah - going through it was tough - and I didn't know if I wanted to.  But, when one doctor told me he couldn't do anything for me - That got me going - and I ended up with a doctor that fixed me right up - and saved my life.  And, it was worth it.  Oh, and I discovered turtleneck sweaters.  I wear one, and unless I talk - no one knows what I have gone through.

    Hang in there.  Those thoughts crossing your mind are not unusal, but you got four kids - and maybe grandchildren in the future - who probably don't care what you sound like or look like.  Mine don't, and that is a big help for me.

     

    Lorna

    2007 & 2014

     

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Hi John

    No one can answer this for you, only for themselves.  Some of us are not confronted with the actuality of another recurrance, some are.  I have been through it as much as anyone, I suppose.    I had my first throat cancer in 1998, treated with rads and a neck disection.  I was 45 at the time.  I had my second cancer at age 56.  That was treated with radical surgery.   My third cancer was just a year later, and was treated with radiation and chemotherapy.  Then I got my fourth cancer almost a year ago.   This last cancer I have chosen not to treat, beyond paliative chemotherapy.  The chemotherapy has extended my lifespan by a number of months, but things are slowly winding down.

    As the treatments have gone on, life had gradually gotten tougher for me as well. Pain, eating, all manner of disabilities that just don't occur to you unless you have them.   I ploughed along with the other major treatments because there was a reasonable chance of a cure.  This last recurrence there was NO reasonable chance of a cure.  The cancer was back in the original site, at the base of my tongue, which had been very thoroughly radiated before.  And importantly, I had some positive lynph nodes down in the lungs as well.  So when they offered me a complete glossectomy (in an area already radiated twice) that would not even remove all the cancer we knew to be there last year, I decided to gather what quality of life I could, and let the game play out.

    For me, this was the right choice.  For others, it just depends on how you see the world.

     

    best to you

     

    Pat

     

  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member

    Hi John

    No one can answer this for you, only for themselves.  Some of us are not confronted with the actuality of another recurrance, some are.  I have been through it as much as anyone, I suppose.    I had my first throat cancer in 1998, treated with rads and a neck disection.  I was 45 at the time.  I had my second cancer at age 56.  That was treated with radical surgery.   My third cancer was just a year later, and was treated with radiation and chemotherapy.  Then I got my fourth cancer almost a year ago.   This last cancer I have chosen not to treat, beyond paliative chemotherapy.  The chemotherapy has extended my lifespan by a number of months, but things are slowly winding down.

    As the treatments have gone on, life had gradually gotten tougher for me as well. Pain, eating, all manner of disabilities that just don't occur to you unless you have them.   I ploughed along with the other major treatments because there was a reasonable chance of a cure.  This last recurrence there was NO reasonable chance of a cure.  The cancer was back in the original site, at the base of my tongue, which had been very thoroughly radiated before.  And importantly, I had some positive lynph nodes down in the lungs as well.  So when they offered me a complete glossectomy (in an area already radiated twice) that would not even remove all the cancer we knew to be there last year, I decided to gather what quality of life I could, and let the game play out.

    For me, this was the right choice.  For others, it just depends on how you see the world.

     

    best to you

     

    Pat

     

    Pat and John

    I just wanted to tell you both how sorry I am for your challenges...I can't even imagine.  I watched my Mom decide she was through with treatments and enjoyed some good times/memories with her remaining good days.  It's a hard decision only the patient can make.  Pat I  sure want to tell you what a help you've been to so many through your expertise and knowledgable information to help us in our own battles!  Hoping for many more years for you both!

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    Pat and John

    I just wanted to tell you both how sorry I am for your challenges...I can't even imagine.  I watched my Mom decide she was through with treatments and enjoyed some good times/memories with her remaining good days.  It's a hard decision only the patient can make.  Pat I  sure want to tell you what a help you've been to so many through your expertise and knowledgable information to help us in our own battles!  Hoping for many more years for you both!

    I just wanted you to know

    your message was received and appreciated.   If I have been/am able to be of any help to anyone, that was well worth the effort.

     

    Pat

  • Viilik70
    Viilik70 Member Posts: 73

    I just wanted you to know

    your message was received and appreciated.   If I have been/am able to be of any help to anyone, that was well worth the effort.

     

    Pat

    Pat

    I've read many of your replies and you've replied to me before and have always had good input that have made my decisions easier for sure and for that I want to thank you! You are a trooper and though you may feel like this life is winding down God has many more plans for you and has prepared a place much more glorious than this and we will have an eternal body that will never give us pain again. I look forward to that day! Thank you again for all the time you've put into this site helping others, you don't even know how much impact you've had because we can not get this from our doctors, we have to get it through other survivors because we are the only ones who know what it's like...

     

    God bless, 

    John J

  • sunshine_65
    sunshine_65 Member Posts: 21 Member
    just one foot in front of the other...

    I agree with others here that there is no "one way" to deal with all of this. I am so sorry for all your troubles. I wish you strength and, if anyone's counting, you're owed some good luck at this point. Keep sharing your worries & feelings - the people here understand and can give you strength.

  • wmc
    wmc Member Posts: 1,804
    Think about where to draw the line ...

    I think everyone has at sometime. Quality is important, as is quanity. I can't answer for anyone, but I have seen it and understood it. My bout with the beast was easyer than most of you, as I never had to deal with chemo or radiation. I had two choises. Have surgery and remove the tumor and my voice with it and neck dissection, or go home and wait. Only less than five ever thought I would make it and ever see me again. If it was to be my time I was OK with it as I have hade a good life. But I knew it was not my time, I have things to do, so we'll do the surgery and i'm fine for now. I got a second chance and may be I can help someone and take some of the fear away. Someday down the road I might have to answer that question for myself, Just not today. I think everyone has more fight in them then they know. For me, it is one day at a time, and only today matters. I push myself to do better and do more because of my COPD. You see, I can beat cancer, just not COPD. Someday it will win. My job is to make it a long time away.  I have been asked if praying helps? It did for me. I was T4,N2,M0 and prayed to just be able to deal with what ever it was. I ended up T3,N0,M0, and no chemo or radiation. I lost my voice box, but I can still talk so, yes my prayers were answered.

    I hope you find strength to go another round and it be easy as it can be. Most of all, I wish you and your family peace with your decision.

     

    Bill

  • Hondo
    Hondo Member Posts: 6,636 Member
    Hi John

     

    Like you I had to fight my C 3 times and it is not a very easy thing to do, but I am not going to post here will PM you my e-mail address better to take that way.

     

    I will keep you in my prayer

    Tim Hondo

  • Viilik70
    Viilik70 Member Posts: 73
    I apologize

    I did not mean that I was going through a 3rd treatment, I was just thinking about how I'd handle it or choose not to do it. The whole point was our quality of life. Where do we draw the line. I get fight the beast at all costs, but how much radiation and chemo can we take?? i know I have it better than most that post on here, but sometimes the stares and repeating myself over and over because people don't understand me. The jaw spasms, jaw pain, throat pain, mouth pain, trouble breathing get to me i admit and I should just thank God for my extended life and be thankful and I am thankful, but I am human and I get frustrated because only the people on this page know how it feels. I can't just call my best bud who is going through the same thing because most of these cancers are rare. Again I'm sorry for misleading that was not my intent, it was just how hard do we fight? How long do we fight? Is it wrong to quit? Am I a coward. I've fought this thing for almost 20 years now and I'm only 44... Sorry I will not post on this subject again because I want this to stay a positive place and a place of encouragement, not discouragement.

    John J

  • wmc
    wmc Member Posts: 1,804
    Viilik70 said:

    I apologize

    I did not mean that I was going through a 3rd treatment, I was just thinking about how I'd handle it or choose not to do it. The whole point was our quality of life. Where do we draw the line. I get fight the beast at all costs, but how much radiation and chemo can we take?? i know I have it better than most that post on here, but sometimes the stares and repeating myself over and over because people don't understand me. The jaw spasms, jaw pain, throat pain, mouth pain, trouble breathing get to me i admit and I should just thank God for my extended life and be thankful and I am thankful, but I am human and I get frustrated because only the people on this page know how it feels. I can't just call my best bud who is going through the same thing because most of these cancers are rare. Again I'm sorry for misleading that was not my intent, it was just how hard do we fight? How long do we fight? Is it wrong to quit? Am I a coward. I've fought this thing for almost 20 years now and I'm only 44... Sorry I will not post on this subject again because I want this to stay a positive place and a place of encouragement, not discouragement.

    John J

    No apologize necessary....... Ever.

    No apologize necessary, sometimes it's good just to put thoughts down in writing, It helps. You are right most of my friends don't understand or even really want to know. Out of site out of mind. But my friends and extended falily here do understand the ups and downs. Have a good day.

    Bill

  • corleone
    corleone Member Posts: 312 Member

    Hi John

    No one can answer this for you, only for themselves.  Some of us are not confronted with the actuality of another recurrance, some are.  I have been through it as much as anyone, I suppose.    I had my first throat cancer in 1998, treated with rads and a neck disection.  I was 45 at the time.  I had my second cancer at age 56.  That was treated with radical surgery.   My third cancer was just a year later, and was treated with radiation and chemotherapy.  Then I got my fourth cancer almost a year ago.   This last cancer I have chosen not to treat, beyond paliative chemotherapy.  The chemotherapy has extended my lifespan by a number of months, but things are slowly winding down.

    As the treatments have gone on, life had gradually gotten tougher for me as well. Pain, eating, all manner of disabilities that just don't occur to you unless you have them.   I ploughed along with the other major treatments because there was a reasonable chance of a cure.  This last recurrence there was NO reasonable chance of a cure.  The cancer was back in the original site, at the base of my tongue, which had been very thoroughly radiated before.  And importantly, I had some positive lynph nodes down in the lungs as well.  So when they offered me a complete glossectomy (in an area already radiated twice) that would not even remove all the cancer we knew to be there last year, I decided to gather what quality of life I could, and let the game play out.

    For me, this was the right choice.  For others, it just depends on how you see the world.

     

    best to you

     

    Pat

     

    Hi Pat 

    Sorry to hear what you are going through. Just wanted to let you know that I always found your posts extremely useful, well documented, and to the point. They helped me a lot.

  • MrsBD
    MrsBD Member Posts: 615 Member
    When is it enough?

    Thank you all for your posts. I'm pretty new to all this, just two months out of treatment. I've also wondered what I'd do if the scan shows the cancer is still there. These have been the toughest months of my life. They've also been the best as I have met incredible caregivers, felt  friends and family draw closer, and recognized more fully that God is in control. My family wants me here, and they'll  take me as I am. Pray, and listen for God's answer. May his strength carry you!

  • hwt
    hwt Member Posts: 2,328 Member
    MrsBD said:

    When is it enough?

    Thank you all for your posts. I'm pretty new to all this, just two months out of treatment. I've also wondered what I'd do if the scan shows the cancer is still there. These have been the toughest months of my life. They've also been the best as I have met incredible caregivers, felt  friends and family draw closer, and recognized more fully that God is in control. My family wants me here, and they'll  take me as I am. Pray, and listen for God's answer. May his strength carry you!

    John

    Certainly no need to apologize for your post. This is a very positive site but sensative and caring. My original cancer was 01/2012 and twice since. The 2nd and 3rd times were wrapped around each of my carotid artieries. I was told in STL that it was inoperable and they pretty much took away all my hope. I was fortunate enough to have the opportunity to go to the Mayo Clinic. They restored my hope and my last several PET scans have been clean. I had SBRT radiation the last two times and additional chemo tx. The SBRT only took 5 days each time. Currently, I am dealing with issues from the original surgery 3 years ago. The titanium in my jaw got infected and had to be removed. I have a fistula and was going to have surgery in Nov but my husband had a significant stoke so that has gone on the back burner. If the cancer returns do I fight again????? I can't say. I think that answer might come a little easier if I had four children. I do feel there is a point where quality of life is most important but I don't know where that point is. I also have allot of faith. For now, I wake each morning and tell myself that today is a day the Lord gave me and to get up and rejoice in it. When I struggle, I read my favorite poem "Footprints in the Sand." I hope you will not have to face the challenge of another battle and will include you in my prayers tonight.

    God Bless,

    Candi 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    John, i have beat it 2 times

    John, i have beat it 2 times but decided the last time that it was my LAST time.  i definitely think we have the right to QUALITY of life vs quantity.  cancer has taken so much and i refuse to let it take any more and make my life worse so if it comes back a third time, i plan to do nothing.  i'll live out what life God gives me and prepare to go "home".  i too have a strong faith and i know that God will decide what's best for me and my life so I'll leave it up to HIM.  My neck and shoulder are in bad shape since tx, i have no voice box, can't smell, can't blow air out my mouth, i breathe through a hole in my neck, can't lift my left arm over my head, i have A LOT of trouble trying to talk (i'm very hard to understand and it takes very much energy), i have trouble swallowing and have to have my throat stretched every 2-3 months and we're watching 3 spots on my lungs.  i feel we all have the right to choose quality over quantity and our loved ones will understand our decision.

    God bless you,

    dj

  • Viilik70
    Viilik70 Member Posts: 73
    Thank you

    Thank you all for your replies and pm's! It's just sometimes we feel like we have it the worst and just good to hear from others so I don't feel so alone in this fight. Happy New Year everyone and God bless!

  • Hondo
    Hondo Member Posts: 6,636 Member
    Viilik70 said:

    I apologize

    I did not mean that I was going through a 3rd treatment, I was just thinking about how I'd handle it or choose not to do it. The whole point was our quality of life. Where do we draw the line. I get fight the beast at all costs, but how much radiation and chemo can we take?? i know I have it better than most that post on here, but sometimes the stares and repeating myself over and over because people don't understand me. The jaw spasms, jaw pain, throat pain, mouth pain, trouble breathing get to me i admit and I should just thank God for my extended life and be thankful and I am thankful, but I am human and I get frustrated because only the people on this page know how it feels. I can't just call my best bud who is going through the same thing because most of these cancers are rare. Again I'm sorry for misleading that was not my intent, it was just how hard do we fight? How long do we fight? Is it wrong to quit? Am I a coward. I've fought this thing for almost 20 years now and I'm only 44... Sorry I will not post on this subject again because I want this to stay a positive place and a place of encouragement, not discouragement.

    John J

    G’day John

     

    I understand and like Bill said no need to apologize. We all get afraid at times and wonder what if, I seen so many miracle in the passed 12 years of dealing with cancer that now I put those fears in Gods hands. He is my shelter when the storm of life passes over my head and He givers me inner strength when I am week and feeble and unable to make it on my own. Hope you have a wonderful New year my friend

     

    Tim