Sitting with Uncertainty - Waiting for Test Results

 

       Time of uncertainty

     → Diagnosis Cancer

the maze of cancer

 

 


     

Before the Cancer Diagnosis

The sooner you detect cancer, the sooner you can gather your resources and the resources of the healthcare community to take action. That’s true whether you have never had cancer or are concerned about a recurrence or progression of the disease.

                                               ____________________

Several key factors that are present before the cancer diagnosis play important roles and contribute to trust versus mistrust, trauma, shock, treatment decision-making, beliefs about prognosis, and recovery.

 
  • Circumstances of a person's cancer diagnosis

  • Prior experience in the medical system

  • Belief systems about health and illness

  • Belief systems about life and death, living and dying

  • Previous experiences with adversity

  • Pre-existing support systems

  • Other social factors such as race, gender, ethnicity, religion, education, employment, finances, and the patient's role in their family.

  • Psychological strengths and weaknesses

  • Coping mechanisms.

  • Self-esteem

  • Personality traits such as independence and motivation

  • Prior history of depression, anxiety, and other mental health issues.

  • Previous traumas

 

Imagine awakening one morning and taking a refreshing shower before leaving for work. Suddenly you detect an irregularity in your breast which wasn’t noticed previously. Your pulse immediately quickens, you feel faint as your heart sinks into a place where only the worst thoughts are harbored. You frantically call your physician’s office. An appointment is scheduled toward the end of the week. Those three days seem like an eternity, as you cannot escape the seriousness of your finding. The waiting game is blinding and devastating..

          

By the time you make it into the doctor’s office, your life has already changed. The discussion following your physical exam is by no means consoling. Mammography and a potential biopsy are discussed. At least you’ve made it through the first stage of the gauntlet. Now for the mammogram! While unrelieved, proceeding to the front desk for scheduling is at least a positive step - a means to an end. Doing something is better than existing day to day in limbo.

Then the unthinkable hits!

You're informed that your doctor’s office is unable to arrange an appointment for any time in the near future. In fact, your mammogram can’t be scheduled for five months. What you're hearing doesn’t seem to make sense. Thinking clearly isn't a given in these situations. The real nightmare now begins.


    


 

People who are waiting for the results of tests or biopsies are frequently in a highly anxious state. The first indication that something is not right can produce a degree of anxiety, but hearing the confirmation of the diagnosis is mostly described by people as traumatic.

Waiting for appointments and test results can turn living with cancer into a full-time occupation and preoccupation. You count the weeks and days until your next appointment and make note of every ache and pain, thinking it might be a symptom of cancer.

           

Every test, difficult or not, evokes anxiety while waiting for the results. What is a routine aspect of daily life in any medical laboratory or doctor's office is far from routine for you, since the results can alter the course of your life. Some providers are sensitive to this, while others seem largely oblivious what it's like for cancer patients to undergo tests and wait for their results.Unfortunately there is little support for people coping with this added anxiety.

          

Many peoples first experience with cancer begins quite simply with the discovery of a symptom or sign known to be a possible cancer indicator. A lump, a sore that has changed in appearance or hasn't healed properly, any persistent severe pain, the presence of unexplained blood, a sore throat or cough that persists - these are several of the most common signs. From this moment, the uncertainty of cancer begins. Could this symptom mean cancer, or can I assume it's nothing?


 

This moment, before the doctor has even been called or a single test has been done, often transforms a person's life from one of general well being and confidence, to one of enormous anxiety and uncertainty about the future.

This pervasive sense of uncertainty probably characterizes the journey with cancer more than anything else. It often lessens when things are going well, but it is a feeling that never completely goes away. This seems to be what people mean when they say, "The diagnosis completely changed my life." That wonderful sense of certainty and expectation of continued life and health, a kind of denial that the bubble can ever burst, which we all start out with, is destroyed forever. Learning to live with uncertainty becomes the bottom line in dealing with cancer.

         

Many people who notice a "suspicious" symptom have encountered cancer before the illness of a loved one, such as a parent or grandparent. If a symptom suggests that you might have the same type of cancer as your loved one had, you may become terrified. Fear that you might go through the same vividly recalled cancer experience, as someone close to you did, can be overwhelming. In such cases, a person may be too frightened to go to a doctor. A sense of hopelessness (if it's cancer, nothing can be done) or a feeling of panic can paralyze your ability to act. This can be the case for some who have seen family or friends with cancer. They can fear it so much, that they delay being treated, sometimes for something that isn't even cancer.

          

Others have not had such personal experiences, but have seen cancer statistics in the media and are extremely afraid of "learning the worst." They delay going to the doctor, even though most warning signs turn out to not be cancer. These feelings of fear, leading to the ostrich syndrome, wanting to put your head in the sand and thinking that the problem will just go away, can be both dangerous and foolhardy if the problem turns out to be cancer. As most people now know, a cancer diagnosed in the early stages can usually be healed. So it is far better to overcome the fear or denial and see a doctor. The relief that follows finding out that it was nothing important allows life to get back to normal, and the fears can be laid to rest. If the problem does turn out to be cancer, you will get a head start on the treatment and improve your chances of overcoming your cancer.

         

Many people describe the period of waiting between hearing the diagnosis - the dreaded words "You have cancer"- and the start of their treatment as the worst time in their illness. The anxiety begins to peak when the bad news is given, but there isn't as yet any plan in place to move ahead with any treatment. It is difficult to tolerate the feeling that there are cancer cells in your body and nothing is being done to eliminate them. The unspoken fear that "I might die" may seem more overwhelming when you are not yet receiving treatment.

The diagnosis changes everything . . . "Now cancer will be my closest possession, going with me from the office to house to conferences and dinner parties, as I go myself. I have got to get used to having it, cancer is always here. I have got to think of what influence it may assume in time, not only over me, but on my family, friends and work".

What comes to mind immediately is how fast cancer alienates one from the usual routines and behavior. It is odd that apart from a slight aching of one body part . . . there is no pain, no dramatic change caused by this malignancy except in my mind. "Does this cancer really exist? Did some harassed technician mix my slides with those of some other poor person"? "I am grasping at straws". There is simply no way to maintain a precise progression of thoughts and actions after such an emotional shock. "My mind swings from disbelief to fatalism. I am vacillating between a surging belief that all will be well and a maudlin conviction that nothing will ever be right again" . . .

           

People were responding in the same way that people do when faced with other kinds of catastrophic news, the death of someone close, a natural disaster such as an earthquake, or a personal catastrophic like the loss of a limb - that profoundly affect life and the future.

People begin to see a general pattern to hearing the bad news. There is an initial response of denial and disbelief. "This can't be true! It's a mistake. I'm sure the slides sent to pathology were mixed up or the doctor confused my tests with somebody else's. It simply can't be happening to me."  - All this is probably the psyche's protective device to provide a little time and space to let the information "sink in", so that the person does not feel instantly overwhelmed. 

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           The second stage

      can be a time of turmoil.


 

     

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The truth can't be denied; it is cancer. You begin to confront the reality more directly.
This often creates a period of restlessness; fearfulness which is hard to control; and preoccupation with the diagnosis and its implications.

There is a sense of helplessness. (What can I do?) and hopelessness (I can't find a way out), alternating with a sense of vague calm (Everything will be okay).

Sleep and eating may become erratic, and concentration on work routine activities becomes impossible.

You may repetitively go over all the fears that the word cancer conjures up: possible death with much pain, becoming disabled, perhaps needing surgery that will drastically change your body function or appearance, becoming dependent on others, losing the sense of acceptance from your family and friends, and then the terror of final abandonment.

These fears are real and they are powerful, as described so well by many individuals who have gone through an experience with cancer.

This stage often lasts until treatment begins and the individual regains a sense of hope. It is important to realize that this turmoil is a common, normal response to the threat to your life. You are not "going crazy." It is unfortunate that important decisions about treatment must be made during this time of high distress when thinking clearly is apt to be most difficult. 

Once you have seen the doctor and had an examination, and the tests have been ordered such as biopsy or scans, your thoughts may alternate between "It's probably nothing" and "I know it's the worst."

Feelings of optimism and despair change from hour to hour. This is part of the response to the possibility of hearing bad news: anticipating what you may feel should it be cancer. For most people this is one of the most difficult times for them - waiting to hear the news.
        

 How anxious are you?


During times of uncertainty or worry it often helps to pin down exactly what you’re feeling, so that you can describe it to the doctor. But how can you make sense of what may be just a vague feeling of discomfort?

You can begin by figuring out what kind of anxiety you have according to what you’re doing, feeling, or thinking. Ask yourself if any of the following apply to you, and rate each one on a scale of "0" (not at all) to "10" (the worst you can have). This will give you some information to talk over with your doctor or nurse.


What are you doing?


  • You pace up and down
  • You are short-tempered with people
  • You cry easily
  • You sleep too much or too little

What are you feeling? 

  • Your heart beats faster
  • You have headaches or muscle pains
  • You don't feel like eating
  • You feel sick to your stomach or have diarrhea
  • You feel shaky, weak, or dizzy
  • You have a tight feeling in your throat and chest

What are you thinking?

  • What are you telling yourself about your situation?
  • What do you believe will happen?

What are you most worried about?


People have a lot of different worries about cancer testing. These worries might include

  • The discomfort of the test itself (such as an MRI, CT scan or spinal tap)
  • Whether the test will show that the cancer has gotten worse or has spread
  • The possibility of more pain
  • The effect of the illness on family and work.

Worrying can be helpful when it spurs you to take action and solve a problem. But if you’re preoccupied with “what ifs” and worst-case scenarios, worry becomes a problem of its own.

Unrelenting doubts and fears are paralyzing, not motivating or productive. They sap your emotional energy, send your anxiety levels soaring, and interfere with your day-to-day life - all this with no positive payoff!

     


Ways to take control of your anxiety and not let it control you.


You can make a difference by making your needs known. You can arrange to get the test results before the weekend, for example, or arrange a time in advance when you can contact the doctor. 


Acknowledge and observe your anxious thoughts and feelings.


Don’t try to ignore, fight, or control them like you usually would. Instead, simply observe them as if from an outsider’s perspective, without reacting or judging. 


Express what you are feeling.


Find a friend to talk with and share your news, your waiting story. It helps to have someone listen to you. Let them experience it with you, cry together, give you encouragement in the waiting, and pray for you to have peace over what you cannot control. Get a hug when you need it.


You may find it helps you focus and express it if you journal. »»healing through writing


Writing by hand engages both sides of your brain, the logical and the emotional. I recommend you first write by hand, to help you feel as you write.

I always noticed that writing helps me, because I engage more with what I say, experience the emotions as I write, and feel a better me for having been there. Writing is healing. 


       


Create a worry period


Choose a set time and place for worrying. It should be the same every day (e.g. In the living room from 5:00 to 5:20 p.m.) and early enough that it won’t make you anxious right before bedtime. During your worry period, you’re allowed to worry about whatever is on your mind. The rest of the day, however, is a worry - free zone. 

It’s tough to be productive in your daily life when anxiety and worry about the test results are dominating your thoughts. But what can you do? If you’re like many others, your anxious thoughts feel uncontrollable. You’ve tried lots of things, from distracting yourself, reasoning with your worries, and trying to think positive, but nothing seems to work.

Telling yourself to stop worrying doesn’t work - at least not for long. You can distract yourself or suppress anxious thoughts for a moment, but you can’t banish them for good. In fact, trying to do so often makes them stronger and more persistent.


     


Acknowledge and observe your anxious thoughts and feelings.


Don’t try to ignore, fight, or control them like you usually would. Instead, simply observe them as if from an outsider’s perspective, without reacting or judging. 

Be productive.


Exercise, do some house cleaning, have some fun time with your family, kids, friends, join a yoga class

Focus on the “what-now," instead of the "what-ifs.”


Keep your focus on the present: Look at the test as a valuable tool for your doctor to use in finding the best treatment for you.

       


Utilize stress reduction techniques preemptively.


Other strategies for keeping your mind in the present while waiting for test results include:

If you’re dealing with uncertainty, you probably have stress in your body even if it’s not at the forefront of your thoughts in this exact moment.

Over time, that body stress affects blood pressure, blood sugar, muscle tension, cholesterol level, breathing rate and every organ in your body. f he periods of stress and anxiety is prolonged, it can affect the immune system at a time when it is most needs to be working optimally. The list of physical and psychological effects of sustained stress is quiet extensive, causing hormonal imbalance which is likely to interfere with the body's natural healing ability. In particular, it may affect an individuals ability to get adequate sleep which is essential in restoring equilibrium to mind and body. 


Incorporate stress reduction techniques into your day, ideally Meditation (»» meditation ) EFT - Emotional Freedom Technique or TFT - Thought Field Technique even if just 5-10 minutes daily. »» releasing your emotions

  • Listening to music
  • Reading what you enjoy the most
  • Doing hobbies that you enjoy the most
  • Talking about your feelings with family, close friends or a support group
  • Reminding yourself of your spirituality, and whatever faith or belief that comforts you.

While meditation is the best way to become more mindful, it isn’t the only approach. Sometimes it helps me to take an inventory of what’s good in today. So I can’t yet plan for tomorrow–that doesn’t have to be a bad thing. That means I can spend today doing other things, like writing, reading, relaxing in the sun, and connecting with people I love. 


     

Distress is also common in the family members and loved ones of people with cancer. It can make it harder to deal with all the changes in your life caused by cancer in someone you love.


Saying that you are distressed can mean that you feel:


  • Sad
  • Hopeless
  • Powerless
  • Afraid
  • Guilty
  • Anxious
  • Panic
  • Discouraged
  • Depressed
  • Uncertain

The stress of dealing with cancer may affect areas of your life other than your feelings. It can affect your thoughts, your behavior, and how you interact with others.


Some distress is normal.


A certain amount of distress is normal when you or a loved one has cancer. This distress is caused, in part, because of the attitudes and fears people have about cancer. For example, one of the big fears people have is that cancer means death. But the idea that cancer always leads to death is wrong.

Of course, people are upset when they learn they have cancer – no matter how much progress has been made in treating it. There are many things that suddenly seem uncertain. People have fears and concerns about what may happen to their bodies. They worry about how their loved ones will cope with cancer and all the things that may happen. And they have fears about what the future will be like. People often wonder, “Am I going to die?” and “Why is this happening to me?”

 

Once you learn that you or a loved one has cancer, you may no longer feel safe. You may feel afraid, exposed, weak, and vulnerable. Such feelings often last through treatment, and you may feel anxiety and sadness, too.

It’s normal to worry when you are waiting for the first treatment. “The worst time for me was waiting for that first chemo treatment,” said one patient. “Once it was over, and it wasn’t as bad as I thought it would be, I was OK. I actually felt better because I was finally doing something about the cancer.”

Waiting for surgery is another time of major concern. People often worry about the operation itself, but also about whether the cancer is growing while they wait. Fears about the changes that surgery will cause can be a major source of distress, too. Then there are concerns about work and home life and how they may change. Insurance and financial issues often add to the worries.

For some people, one of the hardest times is after cancer treatment. Rather than feeling happy that treatment is all over, they feel even greater distress. One patient put it this way: “I’m on my own now – and I’m just waiting to see what will happen next.” live fully after cancer  survivors

Seeing the oncologist (cancer doctor) after treatment can feel quite scary. Nearly everyone has some fear the cancer will come back (recur). This is normal, too. “Every time I have aches and pains, I’m convinced it’s the cancer coming back – even if it is a pain in my big toe,” one patient said.


       


Everything about cancer is stressful


Dealing with the side effects of treatment – such as tiredness (fatigue), hair loss, weight changes, and how disrupted your life seems – is also stressful. In fact, everything about having cancer is stressful. Being upset and worried are part of it, so a certain amount of distress is expected when you find you have cancer. But sometimes distress can go from the expected level to one that interferes with your treatment, makes it hard for you to cope with the illness, and affects all parts of your life.

It’s not a sign of weakness that you become so distressed that it interferes with your ability to do your usual activities. Here, we will try to explain the range of distress – from normal to very high – and offer some ideas about how to handle your feelings in ways that are likely to be helpful.

Your first line of defense in coping with distress is having a doctor and cancer care team you feel safe with. Talk to them about how you feel. They can usually direct you to the help you need. Remember that they are treating YOU, not just the cancer, and they count on you to tell them how you are doing and what you are feeling. Remember, no one can do that except you.

Even though most of the information here may seem like it’s for the cancer patient, it also applies to the loved ones of the person with cancer. These people are a strong source of support, and their well-being is important, too. If you are a loved one and feel distressed, it’s OK to let the cancer care team know that you need help.


         

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