• Anyone here consider not accepting treatment?

    Asked by dvdbriansr on Sunday, September 30, 2012

    Anyone here consider not accepting treatment?

    I'm not looking for sympathy, nor do I condone suicide, nor am I overly depressed, but, I am more interested if anyone else here has dealt with a severe chronic pain issue for many years before receiving a cancer diagnosis has considered NOT accepting treatment for their cancer and surrendering? It's been suggested that I do not absolutely have to seek medical treatment but can opt out instead. First and foremost I'd like to know how you explained to your family that your just plain too tired of having to fight every day of your life to survive in a world that apparently doesn't want you in it and/or for an unacceptable quality of life that you personally cannot tolerate. If so how did you convince the normal healthy family members to accept your decision? Is it possible to get a Dr to attempt to make what time left as pain free as possible. I use the term "pain free" very lightly as I know pain 'free' is an impossibility for me, so lets say as comfortable as medically possible.

    19 Answers from the Community

    19 answers
    • Peroll's Avatar

      I can understand your feelings about dealing with the pain you have been living with. It can make the decision making much more complicated. I will first address your question but then I will give you some important advice in dealing with doctors you clearly need so please read to the end.
      Opting out of treatment at any point is your right. Only you can make that decision. While I have never seriously considered that option my oncologist has talked about the quality of life vs. quantity of life consideration with me a few times. That was always an odd conversation because it was prompted by me complaining about my course of treatment being difficult and seemingly not making positive progress. One thing you will find is that when it comes to cancer lots of people will give you a lot of unsolicitated advice. They mean well but it is sometimes irritating because they give advice without knowing all the details and they think they know all about nutrition or thing like that. As for dealing with people that question your decisions, the best thing I can recommend is to kindly, but forcefully explain that you made your decision for your circumstances and that your mind is made up and you do not wish to discuss it further. If they do not accept that tell them that you do not wish to discuss it further and if necessary walk away. Most people will get the message. Your real friends will support you and your decision.
      Now on to dealing with your doctors, which for your posts appears to have been a problem for you for some time. It appears that you have had communication issues with your doctors. The most important thing I have learned from my journey is that communication with doctors must be good. If you do not feel any of your doctors understand what you are trying to tell them then you must take action. First, tell the doctor that you think that there is a communication problem. That should get his attention and cause him to listen carefully. Then explain your concerns as clearly as you can. Ask him to tell you what he heard to be sure that he heard what you said. Ask any and all questions you have, you have a right to answers that you can understand. Pain management can be a complicated issue as there are laws and regulations that can complicate things so ask lots of questions about what is recommended. If at any time a doctor says they do not have time to answer your questions insist that they somehow make time, offer to take the last appointment of the day so others are not left waiting. Always ask what alternative treatments or medications are available. If you are ever not satisfied with the answers you get from a doctor, immediately seek a second opinion. You should not have to endure debilitating pain, there are treatments available, I know as my wife suffers from chronic pain but is being successfully treated.
      Please let me know how you decide to proceed with or without treatment. I think you can find a treatment that you can live with, will not cause pain and will give you a good chance at a cure. Good luck and let me know if you need any more help.

      about 4 years ago
    • nobrand's Avatar

      I think about it all the time.

      Right now, I'm going the treatment route because prognosis is somewhat promising and it's what my loved ones want. However, things can change, and I know that, for me, opting out of treatment is always an option. Sometimes I worry that the progressively deadly treatments will do me in.. and they cause more pain in your body than the doctor is willing to believe.

      So far, I don't discuss these things with loved ones. I discuss these ideas with myself and with others here on the internet. After all I have read.. I still don't know how I would approach my family members with my decision. It would have to be very personalized to each person you tell. You gotta remember that they want you to be around.. that's why they're your loved one :)

      It kills me to think that your quality of life isn't being supported by your docs already.. I really hope you can find a doctor that will address your pain issues. Maybe the American Cancer Society knows of a specialist in your state who can help fast track the process of getting your pain under control? Give them a call-- they have good referrals! Take care.

      about 4 years ago
    • FreeBird's Avatar

      Remember that you're not alone, and you're not the first one to go through all of your problems. You do seem depressed, understandably from living with chronic pain.

      You are the Surgeon General of your own health care. No one can force you into any treatment for your cancer or other issues that are causing you pain. If family is pushing and you're not ready, I would say that I am overwhelmed and need a little break to read and decide what is the best way to proceed.

      Then, I would get yourself a big note pad, and write down all the things you enjoy, all the things for which you have to live, all of the things for which you are grateful, all the things you would like to do, all the things that are important to you, all the things you can do, and so on. This reminds you that your cancer, and your pain, are not the only things in your life, and you have other things to which to look forward.

      Then start a new page, and write, "Here is where I am right now, and these are my goals for my health." example--
      --I am currently in severe pain. I would like to eliminate that pain to whatever extent possible, so I can return to some level of comfortable quality of life.
      --I have head & neck/throat cancer. I want these questions answered from the doctor_____.
      --I would like to take care of not only my physical health, but my quality of life, and mental and emotional well-being too.
      --I would like my family to know that I love them, and ____.
      --Here is what I want____
      --However, here is what I do not want _____
      --I am depressed over what I believe is the outlook for my health problems, and pain and discomfort that is beyond what I am able to tolerate.
      Go over your situation, and health care goals with your oncologist to develop a plan of action to achieve these specific goals after you have set your mind on what you want and do not want. Knowing exactly where you are, and where you would like to go if you could get there, is helpful. Forget beliefs about what is possible with regard to your pain management. It seems you have had a bad experience with a pain management doctor. I promise you are not alone with that experience. He or she is not the only doctor in the world, and there may be possibilities that you haven't even thought about yet.

      Sometimes before someone starts treatment, they read all the side effects and build a mountain in their mind that seems can't be climbed. With regard to chemotherapy, my dad has been through two different drugs for chemo in the past 2-3 years. It's not the funnest thing to go through, but it was also not as bad as the mountain we created in our minds. You also have the option to start treatment, and then if it's too much for you, blow the whistle and call time out. You are in charge. Do not let anyone tell you otherwise.

      Try to keep your mind focused on living in the right now. Let tomorrow's problems take care fo themselves. Set small goals for today, and take baby steps.

      If in the end, you decide to not accept any treatment for your cancer, and accept the consequences of that, it doesn't mean you have to give up on living the life you have left. There are specialists in "palliative care," that focus on more than just your physical pain issues, and who make it their job to provide comfort care. Tell your oncologist outright that some kind of quality of life is important to you, that you feel miserable in body, in mind, in emotions, in spirit, and that if this is the life that you have to keep living, you do not want to live this way. On a scale of 1-10, pain has become a 10 for you, and you can't take it anymore. Tell them that suicide has crossed your mind. You do not have to give up treatment to receive comfort care either. http://www.cancer.org/Treatment/TreatmentsandSideEffects/PalliativeCare/palliative-or-supportive-care

      The only time you need to stop treatment toward a cure is when you accept Hospice care. You qualify for Hospice care when the doctor feels someone else in your condition might have six months or less to live. It is end-of-life care, to try to make the end of life as comfortable and fulfilling as possible.

      Accept the help of your family, and do not feel that you are a burden. I am sure you have been there for them too. It works both ways. Being able to be here for my dad has been the greatest privilege.

      I would encourage you to not use suicide as an option, especially because your family's mental health is important also. There are better options for landing the plane softly, still living for the people and things you enjoy, and not leaving them with that to deal with.

      about 4 years ago
    • cindywho's Avatar

      Please go thru your treatments. I know what happens to your body when you go thru treatments. I did it and now cancer free for 3 years. Please Please Please do the treatments. You are still a young man!!

      about 4 years ago
    • Mollie's Avatar

      Hi. Your question has really touched me. My grandma, when diagnosed with stage IV lung cancer, told us all she did not want any treatment and wanted the best quality of life she could get through hospice. Her second daughter flew in from half way across the country and guilted her into chemo. She then had no quality.
      My point is, there will be those who fight you on this. In my opinion the best thing you can do is go for hospice and do your best knowing not everyone will "understand". Just remind them it's quality not quantity you're looking for and hopefully they'll get it. You certainly deserve whatever you want. It's your body.

      about 4 years ago
    • Harry's Avatar

      The previous answers are correct. You don't have to accept treatment for your cancer. It's your choice and it's your life. But, you really need to get treatment for your pain.

      The cancer treatment center I went to offered a number of pain management options. I didn't need them, but they were available. I wasn't being "macho." Just didn't need that type of support. If you need it, you should look into it.

      about 4 years ago
    • Crash's Avatar

      My cousin refused treatment. I miss her, her children miss her. She never got to see her grandchildren.

      about 4 years ago
    • carm's Avatar

      Hello, my name is Carm and I am an oncology/end of life nurse. I saw your post and thought maybe I could respond from a different perspective. As an oncology nurse, of course I see this often and hear it often. I know that in the beginning, it seems the battle is an unsurmountable undertaking, one that might not be what you had intended for your life, so it is understandable to have feelings of apprehensiveness. Sometimes, the initial shock wears off and then you kick into that fighting mode and garner strength from sources within you never knew existed. Sometimes...but then sometimes not. As an end of life nurse, I see death in a way that most don't. To me it is not a punishment, it is the reward. Patients all over the world make the same decisions to walk away every day. My role, whether it is in a professional capacity, or in a personal capacity as a family member or friend to one who makes that decision, is a supportive role. I must always remember that my role is to support the decision of anyone who faces that alternative. If it is truly your decision, really yours, and you are not influenced by outside sources (family members, or MDs who tell you there is no hope), then your decision, no matter what you choose, can never be the wrong decision because it is the right one for you. In life we all have the gift of free will. This is your life and no one elses. If you find in your heart that this life is worth fighting for than you owe it to yourself to fight, but fight for you only. If this is too much to consider, and the fight ends with results that you know to be not one you would call a pleasurable life, then you owe it to yourself to go out and find the life that has a better quality, whether that is in this world or the next. Pain can be a strong motivator. In this day and age, no one should be in that kind of pain anymore. A good palliative doctor knows how to deal with pain. Many oncologists know the power of opioids but are too afraid to use them to that capacity, that is a shame. It becomes a domino effect. Fear of overdosing you fuels their hesitation which in turn fuels your fear of a life in pain. As for your family, you should tell them your decision once you make it, but don't drop a bomb and run for cover. Ask them how they feel about your decision and tell them that you are willing to help them come to terms with it, but you are not willing to live a life in pain just to ease their suffering, they are responsible for their own life. You cannot live out your life for someone else. In the end you will be forced to say,"how empty of me to be so full of you." This is not what that gift of life was intended for. It was a gift to you, for you, not an enhancement for another. Before you decide though, think it through, really give it the due time and respect a decision like that deserves. Sit alone and embrace your thoughts, fears, and apprehensions. You might come to a different conclusion. If you do not, then there is nothing wrong with that as long as you choose, and never yield. Best of luck to you, Carm.

      about 4 years ago
    • Carol-Charlie's Avatar

      From your DVD screen name, I'm going to call you David... I hope you don't mind. My name is Carol, First let me tell you who's giving this profound advise. I'm going to have my 70th birthday next year, God Willing. I was married at 20 to my three son's father. I spent 17 years trying to do things right , but could never quite be what he wanted. I was working full time, taking care of the boys, doing all the housework and being physically and mentally abused. With the help of my Church I was strong enough to realize the problem was not mine... but his. My body suffered from the abuse. My back was a dissaster according to the Surgeon. He told me that when the pain was too bad to stand anymore... he would do the surgery to help relieve as much as he could.
      I bought him out of our house, assumed all our joint liabilities and my sons and I were on our own. I was 37. They were teenagers. We made it work and lived a happy three years then we met a wonderful man. If God had asked me to give him the desires of my heart... He would be the one. But of course God did know the desires of my heart. All four of us fell in love with him and we were married... My life was perfect.... but constant pain can.... well you know what that does. We were married when I was 40.. Gilda Radner died of Ovarian Cancer I watched her tell of the symptoms that were so ellusive to diagnose... I thought... If I ever had that - I'd be stage IV before anyone noticed..... I was profoundly right.!!

      The boys... were now men, we'd been married over twenty years and my back pain was unbearable. It was time to schedule the back surgery. The surgeon scheduled me for an MRI.. Then because of something he saw, he ordered another one, wtih contrast. I told my husband what I was thinking - He shook his head over and over and said... no no no.... We'll see what the doctor has to say. My doctor asked me to have a few more test (surgeon had turned me back to her) I did and when we got to her office to talk..... She came in crying... she said "You know, don't you?" I told her yes... but my poor husband kept saying what over and over again. Ovarian Cancer! I will never forget my dear husband saying no no no... are you sure?
      That night...I was awakened to the sound of heavy sobs coming from the living room.... I went to get up and assure him that all would be okay..... Then I stopped... How could I say that...this is a very deadly cancer and we'd found it very late. The sound of his pain was worse than any had ever had.

      Long / Short...I was referred to a gynicologic oncologist surgeon... He did surgery. Removed my ovaries. (I'd had a hystrectomey at 45, but the would not take my ovaries.) The right one with the tumor weighed in about 40lbs. He then removed the cancer he could see from my intestine, and from my eurethea. Then I got MRSA and fought that and won. I asked the doctor how long I had, and his answer was six months. I Had a PET CT Scan and it showed that my oncologist had removed all the cancer. However knowing that cancer cells left floating will find a place to grow... we decided to go for the full chemo option.. I wanted to live... I had one son still single... and with my two and five step children I had 16 grandchildren... So that's me David... I did six cycles of chemo both I/V and I/P... each cycle was 3 infusions. My hair started growing in and.. my wonderful doctor said he wanted me to have 12 more infusions of a very powerful chemo - once a month for 12 months.... we did it.

      Today... I've been cancer free for six and a half years. I go every three months for blood tests and every six months for an exam... Each day is a gift.

      I don't know what I would have done without being told six months. Being told that made me aware of all that is wonderful in life. Removing a 40 lb tumor did alleviate the most severe pain though!!!!! It was laying on my spine!

      God has given us each a life...we each have pain, and heartache, loss and grief. I think we each have a fair amount of love and laughter also. I never thought I'd know love, the never ending... burried beside each other kind (that's the way we described it, when we knew we were perfect for each other.) If you give up and let death happen... how will you ever know the wonders that God has planned for you... What if the happiness comes... and you've let it be too late??? These are just my thoughts, and please know I will pray for your decision being right for you! God bless you!

      about 4 years ago
    • Carol-Charlie's Avatar

      I've been reading your wall and have a few more comments, as if I wasn't wordy enough with my first one. Chemo thereapy.. is not like they show on TV in so many cases. I took on the hard core drugs. My oncologist gave me meds prior to the infusions... I NEVER was sick.. NEVER threw up.... I lost all my hair (benefits only women, but it was nice not having to shave my pits an legs). I guess you wouldn't have to shave your face....:) Tired.... OMG I was tired. But I was able to sleep when tired which was really great. My white cells all but left me, but neulasta shots kept me able to continue all of my chemo. Only missed one, when the white cells initially dropped.. My fingers and feet grew numb... neuropathy.. I see you're familiar with that... well I'm dealing with that too. I'm a bit unsteady on my feet now... but I danced at my grandson's wedding.

      My one major comment. Try fighting... you can die fighting, but at least your family will know that you cared enough to try to stay with them. Here at my age, you can't know how young 54 is. David... my treatments were supposed to be extremely painful... After the pain I'd lived with.... I didn't have trouble with this pain. Heck I didn't even feel it. I know I told God I was terrified of what I had ahead of me... He immediately took my fear away. I asked Him to lead me where he wanted me to be. He took my hand and led me to here... trying to help you. See where he'll lead you!

      about 4 years ago
    • geekling's Avatar

      Yes, I considered not submitting to treatment. Yes, I was in pain. Yes, I was tired.

      No, I was not giving up.

      I looked into all sorts of alternative methodologies, some of which I still use today. I investigated RIFE technology. I looked into dietary changes. I perused supplements and waters and herbs and shamans. Some of these "unconventional" methods I still incorporate into my life. They do help and diet makes an amazing difference. I am a raw foodie in how I eat.

      But then there was a new drug out and I really was so very tired and confused. The drug promised a 95% cure so I went looking for an oncologist who would give me the drug.

      I interviewed six oncologists before I found one who was willing to give me the new drug; who spoke to me as a person rather than patting me on the head saying "Let us take care of you" as though I were a lost dog. It was also difficult to find one who's office was actually clean.

      I did submit to treatment and I write to you from the other side of 10 years past those horrors of radiation and chemotherapy.

      I did not have family left with whom to discuss these things but I did have friends who pushed me. I have two friends, BTW, both male, who survived, very nicely, throat cancer treatments. Don't forget Michael Douglas either.

      I believe you might benefit from a counselor of sorts who can help you to remember the great things in your life for which you need to remember to be grateful and for which you need to try to survive. I tried to give up, for a moment. I offered my life in exchange for that of another. The Lord and Designer of the Universe may have listened, I don't know. I am still here.

      Take deep, deep breaths and take a walk if you are able. Pet your dog, stroke the cat, kiss your wife, hug your kids, stick your feet in a stream, look around at ordinary wonders and try to find new appreciation for that which is all around you.

      Fight in every way you are able.

      about 4 years ago
    • Reel's Avatar

      I just reached the same conclusion myself - to not accept chemo, but my situation is different. My cancer is incurable, but slow growing. I can receive two more radioactive iodine treatments and then clinical trials for chemo are the only option. Although the thyroid cancer community encourages me to take them, I don't see the trade off of quality of life for an uncertain outcome. My wife says she is on board and we don't have children. I'm already almost house bound from cancer related issues, and would have to travel from NC to PA for treatment. I keep my decision to myself now. But I would support whatever you choose. And I would support you if you choose to change your mind. Go with God.

      about 4 years ago
    • princess123's Avatar

      I can tell you that once I started treatment I started to feel better. But I have a different cancer than you do.
      I will also tell you that my kids have reacted totaly different when I told them. After watching their grandmother die of this and then their great uncle my daughter thanked me for getting treated. when I was having a problem with one of the chemos she said " I wont be mad if you stop. I will understand". Mabey your family will understand better than you think.
      Good luck with what ever you decide. I hope your family supports you, whatever it may be.

      about 4 years ago
    • Blue's Avatar

      One precious day at a time, dvd. There are morphine pain patches and suppositories and I wonder if they could rescue you from your discomfort. Do you have access to a pain specialist? Ultimately, the decision is yours and you are obviously a sensitive person. This world needs more sensitive folks like you!

      about 4 years ago
    • VivianT's Avatar

      I think that the decision on what treatment to have and whether to undergo treatment at all is a decision that only you can make. I would advise that you talk to your doctors about your options and possible outcomes, then talk it over with a good friend. I firmly believe that there are quality of life issues that have to be considered. As for friends and family, some will be supportive and others will try to tell you what you should be doing according to them. Try to surround your self with supportive people and limit the time that you spend with those who are negative. As for the pain issues, I have similar issues. My doctor has been great about talking with me about my options, medicine and otherwise. I have made some diet changes, lost some weight and started special exercises to help. I was dealing with the pain issues before the cancer was found. The cancer treatment increased the pain during treatment and for a while after, but there were no long lasting effects. What the cancer treatment did do is make me realized I needed to make some lifestyle changes. I think I am dealing with the chronic pain better than before I found that I had cancer.

      about 4 years ago
    • Quita's Avatar

      I also have refused treatment. I am 89 and have lived a full life. I want to spend the rest of my life doing the things to make me happy . I am giving away my treasures to my friends and family while I can enjoy their pleasure in receiving them. I can still join my drum group and play bridge. the only trouble I have is sleeping all night. You are young and should try every angle to make you well. You should not give up, If I was your age I would be fighting back.

      about 4 years ago
    • Stevedarke's Avatar

      Ask a thousand people the same question and you may get just as many different answers. It has to be all about what you want and it is one of those decisions where you can be absolutely selfish to your own needs. When we are in pain it can be a natural reaction to want out of that pain, the truth is in this day and age our pain should be managed properly, and if not why not? Any decision you make should be a well informed one and like others have said you need to have your mind straight in order to make the right choices for you. I made a living will so nobody is in any doubt as to my wishes; this maybe is something you could look into? I decided to stop my chemo because I was too ill after my operation to tolerate it, which was my own well informed decision, and it turned out to be the right one for me.

      Please do not base you decisions on anecdotal stories of recovery or treatment that unfortunately went wrong for others, but instead base them on the quality issues surrounding your own life. It seems to me that you are struggling to make sense of your options so it is important to find someone who you can trust to be with you when you ask your doctor those difficult questions. It would be wholly wrong of me or anyone else on the forum to tell you what you should do, except to tell you to make sure your choices are well informed ones, and that you are not driven by frustration or through any external pressures.

      One more point I would make is that if you decide to start a treatment and it is not going well for you, then you are under no obligation to continue with that treatment so you are fully in the driving seat should the time come to say no more, therefore it may just be worth while giving it try and see how things progress.

      Whatever decisions you make I wish you well on your continued journey,


      about 4 years ago
    • jag's Avatar

      My Friend, i need a favor, i usually do not ask for one but i feel if though i could ask you.Get the freatment that you need.I can not say i know how you feel because i do not, i am a 13 year survivor of Head & Neck Cancer and believe it was not easy numberous hospital stays, and it made me think when i was a younger man i would watch my father how the pain that he would have day after day but still went to work and then when i started working i saw men that came to work in pain and i wondered how could they do it, so i asked and was told just keep getting older you will see,i am now 63 years of age, and every day the pain and discomfort i feel sometimes i do not know if i am coming or going, but this is what i do i call on Jesus for help to give me strenght to make it through the day,sleepless nights, feeling i can not explain, laying around all day,now do not get me wrong some days are better then others and i enjoy to the fullest.And i do not want to upset my family, my grandchildren, when they come around i tell them PoP-PoP is a little bit under the weather and then to have them come in my room to check on me tell you just help me to feel better,their hugs and kisses,give me strenght.But think about yourself to not feel that pain,now that would make you feel so much better.Now do not forget the favor i ask you about think about it and get back to me.So until then take care of youself and God B

      about 2 years ago
    • jag's Avatar

      Sorry i do not know what happened but God BLESS.James.

      about 2 years ago

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