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View From the Other Side of the Stethoscope

As an internist and cancer survivor, Wendy S. Harpham, MD, FACP, offers a unique perspective on oncology practices.

Wednesday, March 10, 2021

Dear Patient,

Visualization is a supportive therapy that many patients find helpful. While it may not be for everyone, please read this overview of how it works, its potential benefits, and its limits. This way, you can make an informed decision whether to give it a try.

What is visualization?

Visualization refers to a mental technique of creating a picture in your mind. Common images include you striking a pose or doing an activity; a still life or landscape; a shape, design, or color.

How does visualization work?

Visualization directs your thoughts to alter your reactions (physical and emotional) to what's happening or going to happen. Or the mental image inspires you. Whether you use it routinely or only in special circumstances, the practice helps you get in a good frame of mind to make wise decisions, take proper action, and get through adversity.
Visualization is based on a well-accepted fact: The mind affects the body. We see evidence of this when salivating at the thought of biting into a juicy lemon. The nervous system likely mediates the connection between the mind and body. Signals from the brain travel via nerves to trigger changes in the blood vessels, muscles, glands that produce hormones, and so on.

What purpose(s) might visualization serve?
It may help with…

  • Calming anxiety. Focusing on a mental image may ease distress.
  • Motivating you to act. Picturing yourself acting with confidence and/or succeeding may inspire you to start.
  • Boosting confidence. Mentally rehearsing getting through an upcoming test or treatment may build confidence in handling it.
  • Decreasing pain. Distraction and relaxation may bring relief.
  • Strengthening hope. Envisioning a hoped-for outcome may increase feelings of hope.

How might visualization help you physically?
Tapping into this mind-body connection may help you by…

  • Facilitating compliance. Cancer therapies work best when taken on schedule. If fears or feelings of vulnerability tempt you to delay, images of cancer treatment as “healing light" or “armies of cancer fighters" may calm those fears and empower you to proceed.
  • Putting you in a frame of mind to benefit from treatments. Just as athletes visualize to improve performance, you can use it, too. Centering yourself may help you prepare psychologically and physically for the challenges of treatment and recovery.
  • Increasing physical reserves. Recovery from each cancer treatment depends on the body's ability to repair. Visualization may help you overcome obstacles to building up your physical reserves. For example, envisioning food as “healing therapy" or “fuel" may help you overcome a poor appetite to take in enough calories.

What other physical benefits might you experience?
Distressing situations trigger automatic physical changes such as elevated stress hormones. Short-term, those changes can make you feel worse. Long-term, chronic stress can cause harmful consequences. Visualization helps when the brain sends signals to the body to counter unwanted physical changes of the “stress response." For example, a natural response to tumor pain is tensing up, which may worsen pain. Relaxing of muscles near the tumor through visualization may bring pain relief. Over time, less chronic pain can mean less chronic stress affecting your body in negative ways.

How might visualization help your emotional recovery?
Tapping into the mind-body connection may preserve emotional reserves and build emotional resilience by…

  • Decreasing distress. Faced with the discomforts and uncertainty of tests or treatments, a “fight or flight" stress response can further increase the misery, which further drains emotional reserves. By dampening symptoms of anxiety or reining in a runaway imagination, visualization decreases distress.
  • Facilitating restorative sleep. Visualization techniques may be used to help improve sleep—a fundamental factor for physical and emotional health.
  • Improving mood. Visualization designed to improve your perception of what's happening—and to feel better about yourself—promotes optimism and hope, which helps your general mood.
  • Fostering compassion. Visualization designed to foster feelings of kindness toward yourself and others may lead to improvements in self-image, self-confidence, and relationships.
  • Increasing a sense of control. With a clearer head and more emotional energy, you may see more ways to improve the outcome and feel more confident about moving forward.

What are the dangers of visualization?
Dangers include…

  • Using visualization instead of effective cancer therapies.
  • Blaming yourself if a setback occurs.
  • Feeling obligated to do it.

Dangers arise if people believe the mistaken idea that the mind can control the body. Normalizing a mildly abnormal pulse is a completely different phenomenon from controlling the spread of cancer cells. People cannot “think" their diseases into remission.
Another danger is feeling obligated to visualize, even if it's not helping you—or you don't like doing it. There's nothing wrong with you if it doesn't help you. Let it go.
Yet another danger is unfairly blaming yourself if a setback occurs. Setbacks don't happen because a patient visualized “wrong" or not often enough.

The mind only affects the body; it does not control the body.

How can you learn to visualize?
Visualization is fairly easy to learn with a little instruction. You don't need special equipment, and you can practice it almost anywhere. The basic idea is to get settled in a quiet place, take some slow deep breaths, and then quietly focus your mind on a specific image. As with any skill, it may take time and practice to enjoy the full benefit.
There's no single “right" way to visualize. Different approaches address different issues, such as anxiety, fear, pain, low mood, and insomnia. You may need to try a few before finding a good approach for you. Resources include…

  • Cancer support services. Local and national cancer support organizations often offer classes and/or online resources.
  • Counselors. Many social workers, psychologists, and other counselors teach it or can refer you to professionals who do.
  • Books, articles, audiotapes, websites. Whenever using self-help resources, keep in mind that anybody can say, “I'm an expert." Please beware false claims of curing disease.

A supportive therapy that helps in a small way may make a big difference in how you feel. Please consider giving visualization a try. 

Friday, January 22, 2021

Dear Patient,

One tool in cancer care is the prognosis (plural = prognoses). This handout discusses how to use your prognosis to help you make wise decisions and look forward with hope.

 

What does your prognosis tell you?

Your prognosis is an estimate of the likely outcome. You can have a prognosis for...

Life expectancy

Side effects of treatment

Course of illness (e.g., remission; cure; chronic cancer; remitting-relapsing disease)

Late effects (problems that develop months or years after treatment)

How is a prognosis different from a prediction?

A prognosis is not a prediction. A prediction declares that a specific future outcome will happen. In the world of medicine, no tests or experts can foretell how an individual patient will do (unless the patient is literally taking the final breaths).

Nobody can predict—i.e., know ahead of time—how your cancer will respond or how long you will live. Many patients live longer and better than expected. There are long-term survivors of every type of cancer, including patients cured of cancers usually associated with a poor prognosis. Sadly, patients with a good prognosis can end up doing poorly. In all those cases, their prognosis was not wrong. Rather, those patients had an outcome in keeping with the many possible outcomes. Whatever your prognosis, we are moving forward with hope that you do as well as possible.

 

Why can't a prognosis predict what will happen to you?

A prognosis is a statistical estimate based on patients like you—not on clones of you. Those patients don't have the exact combination of factors that make you “you": age, height, weight, genetic makeup, past illnesses, non-cancer medical conditions, medications, diet, exercise routine, environmental exposures, social situation, and unmeasurable factors such as “will to live."

Also, a prognosis is based on past patients. That means those patients may not have had access to the newest treatments. They certainly didn't benefit from treatments currently in research trials that may become available to you in the future—treatments that may improve your prognosis.

 

Still another reason the future outcome will always be uncertain is that it may be impacted—for better or worse—by new diagnostic tests, changes in health care delivery, unexpected events such as a pandemic, or unimaginable discoveries and life events.

 

Given that a prognosis does not predict the future, what good does it do?

A prognosis is a key piece of information that helps you...

Compare treatment options.

Understand the seriousness of your condition.

Make wise decisions about work and home.

Take any needed steps to prepare for a likely outcome.


How does a prognosis help in decision-making about cancer treatments?

When choosing a treatment path, a key factor to consider is the prognosis—the likely outcome—for each option. What are the average life expectancies for patients who decline all further treatment, pursue Option “A," pursue Option “B," and so on? What are the likely side effects and aftereffects with each option? Those prognoses help you construct a list of pros and cons for each option.

 

How might a prognosis hamper wise decision-making?

If the prognosis is not favorable, any combination of shock, fear, sadness, anger, and confusion may hamper your ability to think rationally or to feel hope. Even for patients with a 90% chance of cure, facing their mortality highlights the uncertainty of life, which may stir emotions that interfere with the clear thinking needed to choose the best treatment path.

Please take care to avoid the trap of equating “prognosis" with “prediction." Whatever the prognosis, heed the wise words of the ancient philosopher, Cicero: “While there's life, there's hope."

 

Beyond the treatment decision, how might a prognosis help you?

Whatever the prognosis, try to use it to motivate you in positive ways. There's wisdom in preparing for the worst and hoping for the best. That's because preparing for the worst does not make it happen—and preparing may help you find hope. Many patients report relief after taking care of all the “what ifs." With their affairs in order and delicate conversations behind them, they feel greater energy to direct toward measures that may help recovery (such as eating well) and finding ways to enjoy today.

 

In addition, you can use your prognosis to help you make informed decisions about home, school, and work. Whatever you decide and whatever happens, from now on you may find peace in knowing you made the best decisions for you.

 

During and after treatment, how might a poor prognosis be used positively?

Some patients focus on the uncertainty: “Someone is part of the 10% long-term survivors, and it might as well be me!" Others use a poor prognosis to energize a fighting spirit: “I'll show them!"

 

What if during and after cancer treatment, thinking about the prognosis only causes anxiety or hopelessness?

If, like many patients, the prognosis only increases your anxiety, it's time to forget it and move on. Forgetting the prognosis may seem impossible. It's not. You can know something frightening without thinking about it all the time. Consider that you don't think about the risk of car accidents every time you ride in a car. If the prognosis comes to mind, remind yourself that there are no statistics about “you." Highlight things that distinguish you: “I'm special because ....my tumor showed up in an unusual spot, I'm not the typical age for someone with this cancer, I'm more fit than most people, I am (fill in the blank)...." If receiving treatment in a clinical trial, take comfort in the fact that there are no statistics for patients like you.

Whatever your situation, the best approach may be to shift your focus to making the most of today.

 

Can a prognosis change over time?

Yes. For example, at the start of treatment, you are lumped together with all patients in your situation. If your cancer responds quickly and completely, then at the end of treatment your prognosis is better than that of patients whose cancers didn't respond. For patients whose cancer doesn't respond to a first course of treatment, their prognosis may then improve if their cancer responds well to a different treatment regimen.

 

What now?

Your prognosis is key to getting good care. It can help you make wise decisions and take proper action. Once you've decided on treatment, it's time to focus on making the most of today.


Friday, January 22, 2021

​​Dear Patient,

One of the many decisions you face after a cancer diagnosis is how to communicate health updates to your family and friends. These days, you have lots of options. It helps to know the pros and cons of each. Whether you share your diagnosis with only one person by phone, the whole world on social media, or anything in-between, here are insights and tips to help you benefit from the best method for you, for now.

Do you have to share updates?

No, you don't have to share anything. That said, keeping family and friends in the loop helps you benefit from their support—and helps minimize stressful interactions due to miscommunications. Many patients tell us that such support was invaluable in helping them through treatment and recovery.

 

Who should be the one updating family and friends?

This is your treatment and recovery, and you have a right to tell your story your way. That's why patients who want to do the communicating usually take charge of updating others. Other patients prefer that someone else do it, with them reviewing and approving each update before it goes out. If for any reason you can't or don't want to, find someone who's willing to take over the task. Rest assured you can change who does the updates as your preferences change.

What are common ways to communicate updates?

Group emails. If comfortable with email, sending group updates to your select group allows you to craft the message exactly the way you want it to sound. You save energy by sharing news only once, instead of repeatedly. Remember to use the blind copy address bar (“bcc") to protect others' privacy unless you prefer everyone know who's on the list. Also, remember to find a way to update people who aren't online and won't receive your emails.

CaringBridge (caringbridge.org). This free computer app is designed to “build bridges of care and communication." Only the people you invite can see your updates. CaringBridge also makes it easy to let people know your needs. Whenever you feel like it, you can post updates and read others' encouragement and offers of help. You have the option to add journal entries or photos.

Phone calls. Phone calls (and FaceTime) allow you to share your thoughts and feelings in real-time conversations. The intimacy and immediacy may be just what you need to process what's happening and not feel alone. Along with letters, phone calls are the usual way to communicate with family and friends who aren't online.

Don't be surprised if phone calls tire you. It takes energy to repeat news over and over—even when the news is good. Another risk is being caught off-guard by a comment or topic that upsets you. On the spot, you must figure out how to respond. You also run the risk of your callers getting emotional, making you feel like you need to support them, which is draining.

 

What are advantages of providing periodic updates about your condition?

Advantages include...

Retaining control over the message. You decide which medical details you share, if any, and when you share them. That preserves your physical and emotional energy, while decreasing the risk of people passing along misinformation or spreading rumors.

Obtaining assistance. Your updates provide an easy way for you to spell out what kinds of support you want and need—or don't want or don't need.

Addressing the needs of your friends and loved ones. Your friends and family can do a better job supporting you if they have some sense of what's going on. Your guidance on what you find helpful or harmful as your situation evolves enables them to adjust what they say and do. Importantly, updates also help them manage their own expectations and needs.

What information belongs in an update?

The purpose of updates is to help you address your needs every step of the way. In general, you benefit by (1) letting others know where you are in your treatment and recovery and (2) guiding others to helpful responses to your current needs.

Common topics to cover include...

Your condition: How you feel. What kinds of assistance you need.

Your treatments: How treatments are going. Whether things are on schedule.

Your expectations: The next steps in treatment or recovery. How you expect to feel.

Your needs: Meals. Errands. Rides to treatment. Childcare or eldercare. Messages and cards. Prayers.

Your hopes: Short-term health-related hopes. Non-illness-related hopes.

If you prefer privacy right now, be direct—even if others won't be happy about feeling shut out. One way to phrase it is: “Right now, you help me most by respecting my privacy. I'll let you know when I resume emailing or want phone calls or visits. Until then, I appreciate your understanding and patience."

 

How much detail belongs in an update?

Whichever amount serves you best. In general, the most basic information is enough. For example, “Hi, everyone. I'm half-way through my chemo. Except for the 2-3 days following treatment, I'm doing all my usual activities. I expect more fatigue as the treatments continue. My daily walks should help. Thanks for the meals twice a week. They really help. I appreciate all the cards and emails, too—both of which are better for me than phone calls."

 

It's up to you if you want to add details about setbacks or your side effects, fears, anxieties, or stresses at home or work. When considering what to include, ask yourself, “How does sharing those details help me? How does adding those details help others respond to my needs better?"

 

What if people close to you complain that you're sharing too much or too little?

People have different communication styles and needs. It's common for a patient's spouse, partner, parent, or adult child to prefer sharing less—or more—than the patient. Keep in mind that your illness affects those who care about you, which is why we encourage you to discuss this issue upfront with those closest to you. Bottom line: you have a right to communicate the best way for you.

A warning: You lose control forever over anything you share in public forums such as Facebook.

 

What if you change your preferences about what you share and with whom?

Do what's best for you now. It's common for patients to change who is on their update list and how much they share. If you want more privacy, simply post less often (or not at all) while continuing to email and/or call the people you want to keep in the loop. Your job is taking care of your needs, not everyone else's.


What now?

Talk with those closest to you about your options for updating friends and family. Finding the best way for you is one way to help you get through and beyond treatment.


Friday, October 9, 2020

By Wendy S. Harpham, MD, FACP

Patients often experience distress during the transitions of survivorship. The first begins with the diagnosis, when daily life suddenly includes new demands on their time, energy, and emotions. Another begins when they confront post-treatment life. Whether a patient's cancer experience ultimately fades to a mere blip in the past or marks a major transition transecting life into "BC and AC" (before cancer and after cancer), an understanding of transitions advances compassionate cancer care.

Life Is in the Transitions: Mastering Change at Any Age offers clinicians a useful perspective, even though written for a popular audience. Bruce Feiler is an American writer who survived back-to-back traumas, including an adult-onset pediatric bone cancer. The first half of the book presents his understanding of life transitions—what they are and how people get through them. The second half comprises a toolkit for transitions.

His thesis is clinically relevant: The ability to reconstruct one's life story after a major event is vital to a fulfilling life. With every patient interaction, two stories are underway: the objective cancer story and the patient's interpretive life story. For the first, your clinical judgment and prescriptions map out the storyline while your patients' health-related decisions drive the plot. That co-authorship influences—not controls—the ending. Meanwhile, your patients are reconstructing their personal narratives to make sense of what's happening—a task that may benefit from your assistance.

At the heart of the book is Feiler's Life Story Project. He interviewed 225 select people about transitions related to a major health, career, relationship, or other life event. His team then coded 6,000 pages of transcribed stories for 57 variables, such as age, region, and whether the transition was voluntary or marked with a ritual such as throwing a party. Feiler searched for patterns that might yield insights about adapting to change, analogous to mining genomic databases for truths about treatments.

First, Feiler's conclusion: The idea of a linear life is dangerously outdated, handicapping people with unrealistic expectations and deficient life skills. Bar graphs present data that support normalizing major life disruptions. Subjects averaged 3-5 major life events, with the average transition lasting 4-5 years. Those findings, without minimizing the impact of a patient's illness, may help some patients see their challenges as less extraordinary. For others, it understandably won't resonate because life-threatening disease is fundamentally different than job loss or divorce.

Either way, the existential idea of a non-linear life remains useful in survivorship. Consider patients who feel their life is "off-track" or "on hold." The perception of loss of "what should have been" naturally leads to grief, powerlessness, self-pity, or other painful emotions. To avoid that suffering, patients can dismiss the idea of a linear life and replace it with…well, what?

To find out, Feiler invited his subjects to assign a 2D or 3D shape or image to their life path. After rolling my eyes, the book's next phrase tickled me: "seem[s] like a party game with little point." Yep, it did. Imagine my surprise later that day when I involuntarily tried to envision the shape of my own survivorship and felt energized. That exercise puts patients back in the driver's seat, where they feel empowered to make progress on their life path—just in an unexpected direction. Put another way, it encourages them to take charge as the author of their life.

Patients' stories matter when they affect decision-making or quality of life. Patients' comments may offer clues to their story in progress, such as referring to their cancer as bad luck, punishment, a wake-up call, a gift, or a meaningless biological event. A story suggesting powerlessness or victimhood may indicate the need for counseling. One of misplaced blame or inappropriate pessimism may indicate confusion over medical facts.

A few sentences can help guide patients toward more-healing stories. Your calling their current circumstances "a transition" may stir hope because transitions are temporary. Your mentioning that "transitions are trying and last longer than many people expect" may help them manage their expectations.

For more personalized guidance and support, consider Feiler's three phases of transitions. Is your patient struggling with 1) the long goodbye, 2) the messy middle, and/or 3) the new beginning? Different people get stuck in different phases.

Saying goodbye to the "old normal" causes the pain of loss. Clinicians are in a powerful position to validate patients' losses—whether of hair, body function, meaningful role, or confidence in the future—and to encourage patients to take advantage of support services (see the Patient Handout: Honoring Grief, Oncology Times 2014;36(16):38).

For patients who find the messy middle especially trying, it shows compassion to recognize that moving beyond the old normal means "enter[ing] a maelstrom that often seems chaotic and out of control." As one of Feiler's subjects put it, "I get that the chrysalis is important for making a butterfly, but it's no fun for the caterpillar."

As for creating a new normal during transitions, making sense of life and finding some good in the bad can be hard work. My doctors' and nurses' interest in my early writings and survivorship work meant the world to me. Your patient's t-shirt dissing cancer or celebrating survivorship opens the door to your asking about their story.

Some patients offer few clues. If the timing feels right, you can try introducing the ideas of positive change and post-traumatic growth. Maybe share a story of patients forced to make similar changes who discovered new ways to do things that were better for them than before.

Life Is in the Transitions is provocative and useful, even though some of Feiler's labels and explanations go too far for my taste. The kinds of conclusions you can draw from self-reports of a small select group are different from those drawn from big-data studies of genomic markers and measurable outcomes. That said, this engaging book offers both clinicians and patients practical insights and tips for navigating the transitions of cancer survivorship.

Wednesday, August 5, 2020

I'm thrilled to see the ramping up of data-sharing collaborations among cancer centers. They hold promise for improving the world of cancer care for researchers, clinicians, and patients. As a physician-survivor, I want to focus on one of the many benefits to patients of those collaborations: anticipated need.

In its ideal form, anticipated need is an element of care whereby patients' potential need for a trial is foreseen and tools are in place to match those patients to trials based on their clinical and molecular characteristics. Preempting patients' needs, clinicians can readily generate a list of appropriate trial options to share with their patients who need—or are concerned about needing in the future—a new treatment plan. Already at some cancer centers, if select high-risk patients develop recurrent or progressive disease, clinicians can match them with one or more clinical trials. That's only a beginning.

I'm eager to write about this because we're nearing a time when clinicians will play an increasingly vital role in the success of data-sharing ventures. Even though I was treated too long ago to experience anticipated need myself, my perspective might help you think and talk about it.

In 2016, I began serving as a patient advocate on the Patient Advisory Council of the Oncology Research and Information Exchange Network (ORIEN). My participation has made me acutely aware that data-sharing ventures are huge, expensive, complex, and complicated by lots of moving parts. At the same time, what I've seen has strengthened my hope that they'll fulfill their promise. As with all hope, the outcome is uncertain. Success depends on high-volume patient enrollment, which depends on clinicians' support of high-quality data-sharing ventures. To that end, I'll share my story.

I was diagnosed with my second recurrence and faced a poor long-term prognosis in 1993, decades before large-scale data sharing was possible. Yet I was able to experience many of the same beneifts as those offered by anticipated need thanks to unusual circumstances. To explain, let's rewind to a few months before that recurrence.

My indolent lymphoma was in remission after being treated with Promace-MOPP for stage III disease and, the following year, mini-mantle for a local recurrence. That's when The New York Times published an article describing research at Stanford using chimeric monoclonal antibodies. I was intrigued, knowing that standard therapies for another recurrence would be palliative. I also knew that bone marrow transplants for indolent lymphomas, while providing tantalizing remissions, were too new to determine whether any of those remissions would last.

As luck would have it, I'd done a summer externship in oncology at Stanford 15 years before. My preceptor was happy to connect me with Dr. David Maloney, then an oncology fellow in Dr. Ronald Levy's research lab. I'll never forget how Dr. Maloney took the time to listen to my history and discuss the trial with me, even though I wasn't eligible for the trial because I didn't have measurable disease.

Just months later, I called him with news of my recurrence. The trial had one spot left. After a week of weighing options, I boarded a plane for California. Today, 25 years and 6 courses of various therapies later, I'm in remission, marveling at how all the pieces came together: the New York Times article, my Stanford connection, and the open spot in the trial. What's not a mystery are the ways my knowing about the trial before I needed it helped me as a patient.

Increased access. I'm quite sure my local oncologist and I would not have explored trials had we not already known about the Stanford trial. Given the pace of my recurrences, we felt pressed to proceed with treatment.

Easier decision-making. My familiarity with trials as treatment options gave me advantages going into the decision-making phase. Compared to starting from scratch, the information gathering was less demanding. That mattered because I was physically and emotionally worn out from 2½ years of dealing with cancer, and now dealing with the distress of recurrence. The weighing of options was easier and better, too, thanks to a more nuanced grasp of the advantages and disadvantages of each option.   

Increased healing hope. When confronted with recurrence, already knowing about the trial put me in a hopeful starting stance. Hope tempered fear. The calmer and more rational I was, the wiser—more hopeful—my decision. Having seriously considered trials, I felt I'd left no stone unturned, which gave me confidence in my chosen path. Moving forward, that confidence helped me find hope of achieving the best possible outcome…of Wendy being the patient at the far right of the survival curves.

Decreased self-blame. My confidence that I'd made the best treatment decision also helped me find peace with the possibility—the likelihood, actually—of dying. The fact that we do research because the medical world needs better treatments shifted the blame to medicine's shortcomings. I didn't blame myself for my unfortunate situation, not even subconsciously.

Prepared me to participate in a trial. Throughout the months between the phone call with Dr. Maloney and my cancer recurrence, the Stanford trial felt like an ace in my back pocket—a feeling that helped me manage the uncertainty of my remission. On learning of my recurrence, my sense of pulling out my ace helped me deal with the shock of recurrence, make a wise decision, and then manage the stress of enrolling in a trial.

Without any doubt, my knowing about a trial option before I needed it helped me through a difficult time. Patients who choose to share their clinical and molecular data are making huge contributions to progress in cancer care. Their rewards may be huge, too, starting with decreased stress and increased hope that helps them through tough times. As you pursue your mission to provide expert and compassionate care, take heart in the promise of anticipated need.