STOPPING CANCER TREATMENT: DECIDING WHEN THE TIME IS RIGHT - (Excellent article by Mayo Clinic)

LorettaMarshall
LorettaMarshall Member Posts: 662 Member
in Esophageal Cancer #1
  •  Hello to all my dear friends dealing with a cancer diagnosis

A year ago, January 4, 2016, I posted this article written by the Mayo Clinic.  (http://csn.cancer.org/node/299199)

           As you can see by the date on the bottom of this article by MAYO Clinic is February 20, 2006, I have kept this on file since then.  And rightly so, since my husband, William Marshall, was diagnosed with Esophageal Cancer Stage III (T3N1M0) “Adenocarcinoma at the GE (GastroEsophageal) Junction.   No one has to tell you the raw emotions that surge through your body when you find your name listed at the top of such a report.  Well, in November of 2002, it was my husband.  The good news is that he was able to have pre-op chemo/radiation and an Ivor Lewis Minimally Invasive Esophagectomy (MIE) in May 17, 2003.  Dr. James D. Luketich at the University of Pittsburgh Medical Center performed the surgery.  He is the pioneer this surgery in the early to mid-1990s.  It is the surgery of choice at UPMC for EC patients.  We truly thank the Lord for extending my husband’s life.  William is now in his 14th year of survival with no new evidence of disease (NED).  However, once you research this cancer, you know that recurrence is ALWAYS a possibility.  The chances of long-term survival are better if this cancer is detected in the “early” stages.  But most often “early detection” is not the case. 

           Now my name is at the top of the list.  I was diagnosed with Stage IV Peritoneal Carcinomatosis/Ovarian Cancer as of November 2012.  I have undergone Cytoreductive Surgery. It was never intended to be curative, but rather a “pre-emptive strike” to remove “non-essential organs” to which the cancer could spread further.  Short of a miracle, there is no cure for my cancer.  But, I thank God for the extension of time HE has given both my husband and me.  Knowing full well that I will be facing this decision at some point, I constantly pray about it even now—“Dear Lord please give me guidance as when to stop treatment.

             Since other posts of mine have been more specifically about the treatment of this cancer, I will not repeat that here.  As always, the first decisions are where to find the best doctors, having the complete workup necessary for a correct diagnosis, getting a SECOND opinion, assessing your options, accepting the reality of this diagnosis, and moving on as quickly as possible.  And, of course, our best recommendation is to seek out surgeons at a major medical facility where the Minimally Invasive Esophagectomy is performed on a routine basis.  There are no “easy-as-1-2-3” steps, but there are survivors, and we want everyone to be one!         

           Now this article will not be the first one you need to read, but after an exhaustive effort at treatment, and the cancer still advances, you will be asking yourself this question.  “When to stop treatments?” 

          But for the sake of others like myself who are in the process of facing this most important decision, I prefer the article first published in 2006.  Through the years I have shared it with others who came face to face with the “When-do-I-stop-treatments” decision.  Some have put all their faith in doctors and treatments and trusted that a magical breakthrough would arrive just in the nick of time.  Others have realistically faced the music, put all their cards on the table, and like the Gambler song, sung by Kenny Rogers, (https://www.youtube.com/watch?v=Jj4nJ1YEAp4) have come to the realization that “…You’ve got to know when to hold ‘em and when to fold ‘em and when to run and when to walk away...”  Yes, it’s a heart wrenching decision but knowing when to “fold ‘em” is critical. 

And like the last lines of this Mayo article say, “…When ending treatment makes you pain-free and more able to participate in various daily activities, you might find you have more time for friends and family…” We know certain family members who grieved when their loved ones said, “ENOUGH IS ENOUGH”, but in hindsight, with the passing of time they now agree, it was the best decision.  There’s just never an “ideal” time to leave those you love the most, but my decision will be made on “QUALITY of LIFE” as opposed to “Quantity of Life!”  And it certainly won’t be easy. 

          May God give wisdom to all of us Stage IV’s, who will face this decision at some point in our lives barring a miraculous healing.  Actually I’ve already been given 2 miracles, one for my husband’s longevity, and one for me for entering my 5th year.  I’m now in my third regimen of chemotherapy of Carboplatin and Paclitaxel.  Yesterday was my 5th treatment in a series of 6 treatments (each one at 3-week) intervals.  The cancer is advancing and is even now near my trachea (windpipe) and several other places.  My tumor marker at the beginning of this last series that began Oct. 20, 2016 was “324,” yesterday it had come down to “24”!  So that’s yet another miracle.  Like I keep on saying, Psalm 139 says it all.  “My times are in His hands.”  So I’ll just have to say, “Right now I’m happy and doing the best I can.  There are plenty of things to be thankful for and plenty of people suffering that I would not want to change places with.  So I am blessed!” 

 Loretta

(Peritoneal Carcinomatosis and Ovarian Stage Cancer, Stage IV—also Wife of William, diagnosed with Esophageal Cancer Stage III (3N1M0) in November of 2002—Ivor Lewis Minimally Invasive Esophagectomy (MIE) @ University of Pittsburgh Medical Center by Dr. James D. Luketich on May 17, 2003.  Husband treated with (neo-adjuvant) pre-op chemo of Carboplatin/5-FU and 25 radiation treatments.  Currently enjoying “remission” with no evidence of disease (NED).  However, recurrence is always possible.

 (My note:  Mayo article begins below.  I’m sorry Mayo Clinic no longer has this article on their site.    Perhaps it would be a good idea to print out more than one copy of this and give a copy to each family member who may be “torn” over this decision.  It’s not easy, but the decision must rest with the cancer patient themselves.  They are the ones in pain suffering the most.)

___________________________________________________________________________________________________________________________

  “STOPPING CANCER TREATMENT: DECIDING WHEN THE TIME IS RIGHT

Explore what it means to stop your cancer treatment — from what to consider when deciding, to what to expect once cancer treatment ends.

           You've come a long way.  You made it through your initial cancer diagnosis and the shock and fear that came with it.  You've been through cancer treatment and the related side effects.

           But for all you've overcome, if your cancer treatment isn't working as you and your doctor had hoped, you may face another tough step in your journey with cancer.  You may eventually need to consider ending your cancer treatment.

           As you and your doctor decide whether or not to stop your cancer treatment, take time to gather information and assess your goals.  What you find might help you understand that stopping your cancer treatment isn't necessarily giving up.  Rather, it's a way to gain more control over how you'll spend the rest of your life.

 CHANGING YOUR CANCER TREATMENT GOALS

           When you were first diagnosed with cancer, you and your doctor probably discussed what sort of results you could hope for from your cancer treatment.  You probably hoped that your cancer would be cured.  But if your first line of cancer treatment didn't work as well as you had expected, you might have realized that your goal of a cure was no longer possible and that you needed to refocus your goal.

           In life, whether dealing with cancer or anything else, goals aren't fixed and static.  Goals must remain flexible and change with the circumstances.  This is true when dealing with cancer.  Though your first goal, reasonably, is one of cure, sometimes treatment doesn't go as you had hoped.  Cure may no longer be a realistic option.  Readjusting your goals can help you focus on those things you can still reasonably control.

          Throughout your cancer treatment, three phases or goals of care exist.  When you move from one phase to the next is up to you and your doctor.

  • The quest for a cure.  During this phase you and your doctor hope to cure your cancer.  You might be willing to put up with a large number of temporary cancer treatment side effects for the very large payoff — to be cured.  If your cancer goes into remission, your goal might now be to maintain your health and make sure your cancer doesn't return.

  • Prolonging your life.  If your cancer treatment doesn't proceed as expected, or if your cancer was diagnosed at a more advanced stage, the goal of being cured might not be realistic.  If this is the case, a reasonable goal might be to control or shrink the cancer or prevent it from spreading.  You might be willing to put up with some side effects of cancer treatment.

  • Comfort rather than cure.  A time may come when further treatment has little chance of prolonging your life or of shrinking your cancer.  In this setting, trying to achieve the highest possible quality of life is a reasonable goal.  Side effects must be kept to a minimum because any benefits are likely to be small.  At this point, you and your doctor work to keep you feeling as symptom-free as possible.  You might now focus your goal on your family and relationships, rather than your cancer.  This can be a time of great comfort and even personal growth.

           Your treatment goals are never static, and you and your doctor should continually discuss your goals — slowly and gradually adjusting them based on your individual circumstances.  The process is very gradual and evolves throughout the course of your illness.

MAKING THE DECISION TO END TREATMENT

          Making the transition to comfort and symptomatic (palliative) care can be a difficult choice.  Talking about your decision with your doctor and your family might help you sort out your feelings.  Some points you might want to discuss include:

  • What's your current condition?  Ask your doctor to be honest about your cancer and its progression.  And be honest with yourself.  Denying that your cancer is progressing, while a natural response, might prevent you from being able to make the most of your time.

  • What's your treatment doing?  Is it shrinking your tumor?  Is it fighting your cancer? What benefits is it providing, if any?  Think about the pros and cons of your treatment.

  • Why are you getting treatment?  Is it to shrink the cancer and live longer?  What are the chances of this happening?  Is it to relieve a symptom, such as pain?  Is it working for that symptom?  Are you getting these treatments for yourself, or is it because someone in your life wants you to?  Is there pressure from your family?  Is it worth it?  Many people with advanced cancer want to try every possible treatment, for fear they'll let down their loved ones if they don't.  But sometimes, getting ineffective treatments only takes you away from your family and loved ones for longer periods of time.

  • What's the downside to treatment?  What side effects do you experience?  Are they mild or are they intolerable?  To what extent does the treatment limit your ability to participate in the activities you enjoy?  Consider your quality of life.

  • Is the downside worth it?  For the benefit you're receiving from your treatment, are the side effects worth it?

  • What do you want for your future?  Will continuing your treatment prevent you from taking part in those activities?

         In your decision to end your treatment, take into consideration your religious beliefs and other personal values.  Discussions with your religious adviser can help you focus your goals.

 DISCUSSING THE END OF YOUR TREATMENT WITH YOUR DOCTOR

           In a perfect world, the decision of whether or not to end your treatment will be thoroughly discussed between you, your doctor and your loved ones.  Your doctor would be sure of the potential benefits of your treatment.  And you would be open with your doctor about your fears and hopes for your future.

           In truth, your doctor might find your prognosis difficult to estimate, and you might be afraid to admit feelings of depression or anxiety.  For this reason, it's important that you and your doctor have adequate time to ask each other questions and not be afraid to ask or answer difficult questions about your future.

           Many times you and your doctor will agree with each other on whether to continue treatment.  But in some cases, you might disagree.

 WHEN YOUR DOCTOR WANTS TO END YOUR TREATMENT, BUT YOU DON'T

           If your doctor approaches you about ending your cancer treatment, you might feel betrayed.  You might feel like your doctor wants to give up on you.  Maybe you've been denying the fact that your cancer treatment isn't working, and you aren't ready to accept the fact that it might be time to stop.

           Know that your doctor has your best interests in mind, and listen to your doctor's reasoning.  Ask questions.  Be honest about how the thought of ending your treatment makes you feel.  Just because your doctor suggests no longer treating your cancer, your doctor will always continue to treat you, to assure comfort and relieve symptoms to the best of his or her ability.  Ask to see X-rays and other tests that show the progression of your cancer.  This might help you better understand your doctor's opinion.

           You might be reluctant to stop your treatment because you're afraid to lose control over your health.  You might also equate ending treatment with giving up.  But you can maintain both control and hope without the cancer treatment:

  •  Maintaining control.  Deciding you don't want any more cancer treatment is a form of control in and of itself.  Taking away the treatment means you can have more time with friends and family without the side effects keeping you sidelined.  You can control your pain so that you can have a better quality of life.  And you still have control over several aspects of your own care, such as what you do and who you see.

  • Restoring hope.  If until now hope has come from your expectation of a cure, then ending your treatment might seem like giving up hope.  But you can draw hope from other places.  Time with friends and family and the comfort your loved ones bring can provide hope, too.  Terminally ill people often say that hope comes not from treatment, but through connections with others, spirituality and uplifting memories.

           If, after discussing your treatment with your doctor and your family, you decide you don't want to stop your treatment, your doctor may be willing to continue treatment.  However, if your doctor knows the treatment will only hurt you, he or she can refuse to treat you.  If that happens, you can request a review of your case with the hospital or clinic management.  Or you can get a second opinion from another doctor.

 WHEN YOU WANT TO END YOUR TREATMENT, BUT YOUR DOCTOR DOESN'T AGREE

           Sometimes pain and other side effects can make your cancer treatment unbearable.  This may influence your decision to stop treatment — even if your treatment seems to be working.  But pain and side effects can sometimes be remedied so that you're more comfortable as you go through your cancer treatment.  Talk to your doctor about getting help for symptoms such as:

  • Pain.  Without proper pain control, you might feel like abandoning your treatment before you've given it time to work.  A number of solutions — from drugs to complementary therapies, such as meditation — can help you control your symptoms.  Your doctor can't detect the severity of your pain, so it is up to you to speak up.

  • Anxiety.  It's normal for you to be anxious about what is happening to your health.  Anxiety about your future and your family's future — financial, emotional and otherwise — are completely normal.  Medications might help you relieve your anxiety.  But talking with your doctor or another health care professional can also help you sort out your feelings and provide relief.

  • Depression.  Depression is common in people with cancer.  But those feelings of hopelessness can contribute to your physical symptoms, making you think you're worse off than you really are.  Medications are available for depression, and talking about your feelings can help.  Physical signs and symptoms of depression, such as weight loss and fatigue, are difficult for your doctor to diagnose since they can also be caused by your cancer.  So tell your doctor if you think you might have depression.

           After these factors are controlled, you might be in a better frame of mind to make a decision about continuing your cancer treatment.  Don't accept pain, anxiety and depression as part of your cancer — they can all be controlled to some extent most of the time.

           If you simply don't want to continue treatment, that's OK.  It's not a sign of weakness.  When to stop treatment is a highly personal decision.  You can always change your mind and restart your treatment if your doctor agrees.

           In the end, it's your decision to make, but input from your doctor, other health care workers and your friends and family can be an important part of the decision-making process.

 TELLING YOUR FAMILY AND FRIENDS

          If you decide to end your cancer treatment, be honest and open with your family and friends when telling them.  Talking about your feelings can be therapeutic.  It can also help your friends and family come to terms with your decision to end treatment.  They'll better understand what they can do to help you and how you want them to behave toward you.  You might prefer to keep your feelings to yourself, and that's OK too.

           It's possible that your friends and family might not understand your decision because of fears about your future or theirs.  Talking about your decision to end your treatment and your change in goals might help them overcome these fears.

           If you have difficulty talking with your friends and family or if they have difficulty accepting your decision, talk to someone trained in counseling, such as a nurse, social worker, psychologist or a member of the clergy.  That person might have ideas for you to make talking with your friends and family easier.

           Your friends and family may just need time to adjust to your decision.  Let them know you want them close and still need their support.

            Talk with your family about your wishes for the future — called advance directives.  Discuss whether you'd want to be kept alive if machines were breathing for you.  Appoint someone to make health care decisions for you if you were to become incapacitated.

 clearclearWHAT TO EXPECT AFTER YOUR TREATMENT ENDS

          If you decide to end your treatment, it doesn't mean you'll stop being cared for by doctors and nurses.  You and your doctor will discuss your options.  You might have a loved one or friend who wants to help take care of you.  Or you might decide to use a home nursing service.

           No matter what you choose, you'll still have regular checkups to make sure your pain is kept at bay and that you're comfortable.  Your doctor might have you seen by another doctor who specializes in palliative care — a doctor whose main focus is to make you comfortable, not cure you.

          Stopping your treatment doesn't mean you'll die immediately.  After you end treatment, you could still be active and care for yourself for many months.  It's also possible your health could deteriorate rapidly.  How long you'll live after ending your treatment will vary depending on the type and stage of your cancer, as well as other health problems you may have.

  •  Whether you want to stay at home is up to you and will depend on the level of care you need.  You might feel more comfortable in a hospital or nursing home with doctors and nurses nearby at all times.  Or you might prefer the comfort of your home with a nurse to check in on you every day.  You might choose a hospice program, which is designed for people who generally aren't expected to live more than six monthsclear.
  • MORE TIME FOR WHAT MATTERS

          When ending treatment makes you pain-free and more able to participate in various daily activities, you might find you have more time for friends and family.  Being able to be cared for at home might mean you could keep up with hobbies or activities that make you happy.“

__________________________________________________________End of article ___________________

--housecall_c_toprightclear“By Mayo Clinic Staff --Feb 20, 2006 © 1998-2006 Mayo Foundation for Medical Education and Research (MFMER).  All rights reserved.  A single copy of these materials may be reprinted for noncommercial personal use only.  "Mayo," "Mayo Clinic," "MayoClinic.com,"  

This article was revised by MAYO Clinic in May 2013.   You can access that here. http://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-treatment/art-20047350“Cancer treatment decisions: 5 steps to help you decide”

 

Comments

  • paul61
    paul61 Member Posts: 1,392 Member
    #2
    I am so glad to hear your latest test results

    Loretta,

    It makes me so happy to hear that your most recent test results were good news in terms of your recent treatment. We have to celebrate “small victories” as we move forward in this journey.

    Thanks for posting this article again. I think it is almost more important for family members of a cancer patient to read this article as it is the patient. It seems like many times, even when the patient has decided “enough is enough”, the family members apply pressure to continue treatment so they can have a few more days with them. It is hard to say “I am here for you in whatever decision you make” but that is the loving decision that all cancer patients hope for.

    I agree that we are all survivors with a “terminal disease” called “being human”. There is no question about the final outcome, but only God knows the number of days we have. I believe my job is to live each day with the grace and thankfulness for the gift of that day and to avoid looking beyond that day.

    Wishing you and Bill they very best, you are both in my prayers daily.

    Best Regards,

    Paul Adams

    McCormick, South Carolina

     

    DX 10/2009 T2N1M0  Stage IIB - Ivor Lewis Surgery  12/3/2009
    Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
    Six Year Survivor

     

     

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