Cancer treatments have progressed to the point where a cancer diagnosis is not the automatic death sentence it used to be. And even those who have an incurable cancer still have days and weeks, even months, to partake of life’s pleasures: laughing, visiting with friends, sharing a tender moment.
Living with cancer is not a matter of days filled with pain and waiting to die. It is about living fully while you are here, whether that is a short time or a long time.
Common cancer experiences
Treatments and cure rates vary depending on the type of cancer and the health of your loved one. That said, there are phases in the course of a cancerous disease. With each phase come different pressures, concerns, and common reactions. These articles can help you understand what is happening in your family. You are not alone.
If your relative recently received a diagnosis of cancer, according to the American Cancer Society he or she is already a “cancer survivor.” Whether the journey is a long one or a short one, living with cancer takes courage and commitment. You are in good company! More than 11 million Americans are living with this diagnosis.
Below are tips to help you as you make your way together as a family.
Lay a foundation
Anger, sadness, and confusion are among the many normal responses. And, of course, fear. Encourage your loved one to talk about these feelings. Listen openly. Consider suggesting a support group with others who have had a cancer diagnosis.
Provide reassurance Let your relative know that you are in their corner. All cancer patients are advised to have a fact-gathering friend at medical appointments. If you can do this, If not, perhaps you can help find someone who can.
Ask how much detail is desired
Your loved one may want to know everything. Or may prefer to not know and defer to someone else for decisions. Let the medical team know your relative’s preference.
Take the first key steps
Get exact information
Ask the doctor what kind of cancer it is, its size, stage, and usual growth pattern.
Find the right doctor
You want a sense of teamwork with a doctor who listens and explains in words you and your loved one understand. If this isn’t the case, switch.
Learn treatment options
Get details about side effects and usual outcomes of potential treatments. Whether the desired results are likely or unlikely may determine the course of action.
Consider a second opinion
Meet with a doctor specializing in your relative’s type of cancer.
Encourage your loved one to stay connected with friends and engage in enjoyable physical activities. It’s best to focus on pastimes with personal meaning. Also ask that she or he accepts help with routine tasks, such as cleaning and cooking. Similarly, for yourself, be sure to accept help even in this early stage. You need to pace yourself so you can go the distance!
What are the first steps you feel comfortable taking?
Cancer taxes families in extraordinary ways. There is no right or wrong way to respond to cancer. It’s more a matter of finding a balance between the coping style of your relative and the style of those around him or her. How a family has addressed difficulties in the past is a good indicator of what may occur now.
To weather the journey, keep the following in mind:
Emotions run high Cancer lends an air of peril to life. As a result, you and all your family members may react strongly, becoming extra irritable or sensitive, even to little things. If you are the target of your loved one’s outburst, it’s most likely because you are the safest person. It may be small comfort, but know that the anger is at the cancer, not at you.
Sibling rivalries reemerge With increased contact, it’s not uncommon for childhood tensions to resurface. You might be interested in reading our article about family conflict. If you cannot find ways to set tensions aside, consider engaging a therapist to help you resolve old wounds. A social worker or care manager can facilitate a family meeting.
Roles change As adults, much of our self-worth is about what we accomplish. Your loved one may find it difficult to adjust to new limitations. Similarly, you may not be accustomed to being in the lead. Other family members may also balk at the shift from expected roles. Give yourselves some leeway to learn as you go.
“Normal” is a blessing There’s a natural tendency to treat an ill person as fragile. Encourage your relative to do as much as he or she can do independently. Strive to maintain a whole-person perspective. Talk about topics he or she has enjoyed in the past and promote staying engaged with friends, hobbies, and “non-cancer” activities.
What might you do to help your loved one retain a sense of normalcy? What can you do for yourself in this regard?
It’s natural to wonder how bad a serious condition is. What are the chances a treatment will be effective? The prediction of recovery, in medical terms, is called a “prognosis.”
A cancer prognosis, for instance, depends on
What type of cancer is it? What is its stage (size)? Grade (aggressiveness)? Where is it?
What is the person’s age and general health? How likely is he or she to bounce back from the stress of treatment?
A doctor can estimate treatment outcome by comparing your relative’s situation with the statistics of others in similar circumstances.
Five-year survival rate Prognosis is most often described in terms of survival rates five years after diagnosis. For example, the doctor might say that people who undergo a particular treatment have an 87% five-year survival rate. That means that 87 of every 100 patients who receive that treatment are still alive five years afterward. A different treatment will have a different five-year survival rate.
An educated guess At best, a prognosis is an educated guess. It’s an average across a lot of people. Bear in mind, no two people respond in exactly the same way to any one treatment.
Some people like knowing For some people, hearing a prognosis helps
Having clear-cut information can empower and motivate by revealing exactly what you’re dealing with.
define treatment options
Comparing survival rates can help people make treatment decisions, including the option of no treatment.
promote the best use of time
Knowing the survival rate can be the nudge to address lingering family issues or legal matters. And to move forward with what’s still on the bucket list.
Others prefer not knowing For other people, discussion of prognosis is disturbing, even frightening. For them, a prognosis is counterproductive. Whether your loved one prefers to know, or not know, is simply a matter of personal style. You may have a preference for yourself. But one style is not better than the other. Before talking about survival rates, determine your relative’s preference for how much he or she wants to know.
Would your loved one prefer to know the prognosis or prefer not to know it?
What is best for your relative depends on many factors. Some are medical. But some are personal. These relate to your loved one’s phase of life and what he or she feels makes life worth living. Following are the key questions to explore:
What treatments are possible? For each option, you will want to know:
What does the treatment entail?
Where is it given? How often? And for how long?
How and when will you know if it is effective?
What side effects might occur?
Some treatments have immediate and debilitating side effects, such as nausea or fatigue. Some may have long-lasting effects, such as bone or muscle weakness. Surgery that removes a body part may necessitate an artificial replacement. Also ask:
What can be done to help reduce side effects?
How long will the side effects last?
How much help will your relative need during treatment?
Can he or she be left home alone?
What are the risks and benefits?
Find out the short-term and long-term risks and benefits for each treatment. You will want to know the prognosis,often expressed as the percentage of patients who are still alive five years after treatment. Other questions include:
Will the treatment “cure” the disease?
What is the likelihood the cancer will return?
How long might your relative live if no treatment is given?
Will treatment provide additional years of life? Months? Weeks?
What kind of quality of life can be expected following treatment?
How does this compare with the quality of life if your relative declines treatment?
Is the treatment covered by your loved one’s insurance?
Treatment is a very personal decision. Much of it has to do with your relative’s definition of a good quality of life. Discuss the pros and cons of each option with the doctor and weigh them next to your loved one’s values and priorities.
How does your loved one define quality of life? How might that affect treatment decisions?
If the decision is to pursue treatment, this phase is a time of intense activity. Initially, you may feel relief and hope. Something is finally happening! But treatment also takes a lot of your time and energy.
This phase requires making arrangements for
transporting your loved one
Treatment may be a one-time event, as in the case of surgery. Or your relative may have appointments several times a week. Or even daily.
coping with side effects
Ongoing side effects, such as nausea, fatigue, bleeding, and infections, may require that someone be with your family member daily, possibly 24/7.
managing nonmedical needs
Bill paying, housework, shopping, and meal preparation may be more than your relative can manage independently.
Pace yourself Treatment often takes weeks, and sometimes months. It is hard to imagine how much your relative’s treatment will demand of you physically and emotionally. Experience shows it’s typically too much for one person alone. Like any long-distance runner, you will need to pace yourself and make wise choices for taking breaks.
Address your own life responsibilities
If you work or have other family obligations, you will need to find ways to reduce your load. If you work, ask your employer about family medical leave.
Organize help Family, friends, and neighbors are likely to rally early on. But it’s natural for their assistance to taper off over time. Be proactive and ask them to commit to ongoing help. Lotsa Helping Hands and CaringBridge are free online services that can help you coordinate schedules.
Set aside time for yourself If you are the primary caregiver, block out time for keeping your strength up. The fatigue of this phase may cause you and others to wonder if it’s even worth continuing. Set aside time for good sleep, good meals, physical activity, and periods away from the focus on cancer and caregiving. It’s not selfish. It’s essential. If you burn out, who will carry on when the going gets rough?
What might you do to get support during the treatment phase?
Although you are likely relieved that the treatment is over, you may experience strong feelings flooding in, such as sadness, anger, and fear. It’s common for people to push emotions down just to get through the treatments. Once the immediate threat is over, then the feelings resurface.
Fear about a recurrence
Even if the doctor says your loved one has no more cancer, the joy of such news may be tempered by worries about the cancer coming back. This is a natural response. Worry is certainly useful when it calls us to action. But it’s a problem when it becomes an ongoing state of mind. It can become a habit, bringing tension and stress.
Keeping worry in balance. If you’re a worrier, you may have mixed feelings. It may seem that worry
keeps you on your toes; yet it
makes you edgy and distracted, interfering with your sleep and peace of mind.
Relieving the stress of worry doesn’t mean you have to stop worrying. Here are some strategies to keep worry in balance:
Don’t try to give it up
Instead, do it consciously and take notes! Schedule a 45-minute “worry time” for yourself every day. If a worry pops up at another time, write it down for review during your next worry period.
Clarify what is fact and what is emotion
Hint: Facts are in the present tense. (“Mom seems tired and is coughing a lot.”) Emotional concerns often have a “future” component involving a problem that might happen (“What if the cancer has returned?”)
Create a strategy for action
Unproductive fears are usually based in uncertainty. Create a list of action steps to answer the unknowns. (Review the symptoms of recurrence. Track symptoms in a daily log. Make an appointment with the doctor.)
Write out a balanced perspective
While completing the action steps, your mind is unlikely to just “let go” of the worries. For each worry, write down evidence in its support and evidence against it. For instance, “Dad spent the afternoon in bed today. Then again, just last week he played a full round of golf with his buddies, and no coughing.” When the worry reappears, you can respond to it with this fact-based thought.
Seek professional help if the worrying is getting the best of you.
Living with uncertainty
Doubts and the unpredictable can be hard to bear. Consider teaching yourself to feel more comfortable with the unknown. Use these questions to recognize and challenge your “need” for certainty:
Is it possible to be 100% certain about everything?
In what ways has your need for certainty been helpful to you? Are there ways it has been unhelpful?
Do your predictions focus mostly on bad things happening? Can you imagine other possible outcomes?
When you think about your life, are there uncertainties that you currently tolerate well? What helps make that possible?
You may find that your responses indicate you can, and are, coping with more uncertainty than you had realized.
To further support your acceptance of uncertainty, try these actions:
When your thoughts involve a lot of worries and “what ifs,” take a moment to notice them. Remind yourself, “Oh, there’s my desire for certainty again. That’s a preference, not a life requirement.”
Take a slow, deep breath, exhale, and visualize your need for certainty wafting away.
Refocus yourself on the here and now. Pay attention to the sights and sounds around you and to your present task.
Do what you can to stay focused on what you can control. To the degree possible, strive to accept that some things are as yet unknowable and release them to the future.
Finding your “new normal”
After the treatment phase, it helps to concentrate on a return to “normal.” Or at least a new normal. While making this shift, let your loved one take back as many of his or her usual responsibilities as possible. Each week, ask yourself what more he or she could start doing again. If physical changes pose limitations, ask the doctor for a referral to physical or occupational therapy for help.
Your relative may still need you to monitor his or her treatment side effects. Family and friends may become less available. And you will also have less contact with your loved one’s cancer team. It’s wise, therefore, to cultivate support from other sources, such as a caregiver support group.
Organizing and putting away the medical records
This is also a good time to assemble all the medical records while treatment is fresh in your mind:
The official diagnosis and all biopsy reports
A list of all treatments, including dates, dosages, and the name of any medications
Reports from any surgeries or hospitalizations
Documents that describe any problems that came up during treatment
These records will be helpful if questions arise in the future. This task is also a nice way to “close out” the treatment chapter and turn your focus to the benefits of survivorship.
How might you keep worry about the future in check?
A doctor almost never tells a cancer patient, “You are cured.” This is because many cancers have a pattern of remission (no obvious symptoms) and then recurrence. Nevertheless, one always hopes.
Hearing that a loved one’s cancer has come back or has spread (metastasized) can admittedly be heartbreaking for everyone. Having gone through the war zone of cancer treatment as a family, you know how difficult it can be.
Being a cancer veteran, however, also gives you advantages:
You know what assistance helps
Having a meal delivered now and then. Asking a neighbor to take out the bins on trash day. Having someone pick up medicines at the pharmacy. You’ve created a support system before. Time to reengage it.
You know what didn’t work well for you.
This gives you an opportunity to try other options. Maybe your friends weren’t as supportive as you had hoped they would be. Perhaps you could try a support group of cancer caregivers. Maybe even check out a group online.
Depression and anxiety It’s quite common for both the patient and family members to react to the news of a recurrence with depression and anxiety. Fortunately, these can be treated quite readily. Seek help quickly if you sense the emotional ship is sinking.
Is treatment the best option? You may all question whether it makes sense to go through a new round of treatment. This is an immensely personal decision for your loved one. You may want to review our article about quality of life together and talk about what makes life worth living. For instance, are there situations that would be worse than death?
If the decision is to no longer seek treatment, you can get powerful support from hospice. These professionals work with you to ensure that every day is the best day it can possibly be. They help identify attainable goals and then work with you as a family to help your loved one make the most of the time that is left. If you’d like to learn more about hospice, give us a call at 646-240-4888.
Maintaining appropriate hope
Even if the recurrence means things are more serious, it does not mean that your days must be filled with hopelessness. Hope simply takes on a different shape. Everyone needs things to look forward to. Help your loved one and other family members focus on simple pleasures, such as visiting with friends, listening to favorite music, singing together, or reading aloud.
What systems did you set up that were helpful during the last bout with cancer? What might you do differently this time?