MM Testing Archives
Testing is an ever-present part of the journey for Multiple Myeloma, helping identify stage, treatment options, progress, and potential recurrence. Testing can also introduce a whole new vocabulary into your life. Don’t let jargon overwhelm you or undermine your grasp of test options and results.
More resources for Multiple Myeloma Testing from Patient Empowerment Network.
How Targeted Therapy Works to Treat Myeloma
How Targeted Therapy Works to Treat Myeloma from Patient Empowerment Network on Vimeo.
Nurse practitioner Charise Gleason explains how targeted therapies work to fight myeloma and how they may be used in combination. Charise also discusses how targeted therapies differ from radiation chemotherapy.
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.
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Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key |
Transcript:
Charise:
Plasma cells or myeloma cells have a target on the outside. And so, CD38 is a very common one. You think of daratumumab, for instance, that targets CD38, because it’s on the surface of every plasma cell.
You have what’s called CS1 on the surface of plasma cells that elotuzumab targets.
And these drugs target that particular marker to break down that myeloma cell in a different way. The reason we use combination therapies are not just because we think this is a great idea to put them together. We know dexamethasone, for instance, is going to make that plasma cell more presentable and make that target more presentable to let, for instance, daratumumab work on it. And then you take something like an immunomodulatory agent that works in another way. But as far as targets, that’s on the surface of the cell is what we’re looking for on that particular one.
With the translocation, that’s one that’s very specific. If you take a translocation (11;14), those patients can express high BCMA, another target on a plasma cell.
And so, that’s the reason again why that works for some of those patients, because it attaches and kills the myeloma starting from that outside and working into the cell.
The traditional chemotherapy approaches just worked at killing everything, including normal cells, right? And so, you have a patient who gets admitted for chemotherapy, for instance, it knocks everything down and with that, the myeloma. And then those cells come back up. And so, you think of that more from a traditional admit to the hospital. We give several days of chemotherapy or the conditioning regimen for transplant with melphalan It wipes out everything.
And so, sometimes we still need to do that and do that maneuver to reset the bar. But there’s more risk to the patient with that, we’re making a patient more immunocompromised. With targeted therapy, it’s more specific to that target. So, it’s really working more to kill those abnormal cells in there. So, the patient doesn’t experience quite that same immunosuppressive state where everything is knocked down.
Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key
Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key from Patient Empowerment Network on Vimeo.
Charise Gleason, a nurse practitioner, provides insight as to why identifying chromosomal abnormalities is essential when it comes to targeted therapy as a treatment choice for myeloma.
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.
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Key Considerations When Choosing Myeloma Treatment: What’s Available? |
Transcript:
Charise:
So, testing for chromosome abnormalities or changes are important when it comes to targeted therapy.
And we used to think of this more in that relapse setting. But we also look at it upfront now, because it tells us more about the path of myeloma. And there are reasons to check throughout at relapse, again, to see if something’s changed. So, with targeted therapy, we can use the translocation (11;14), for instance.
Many patients have a translocation t(11;14). It’s not a high-risk feature. But we know on clinical trial we have a drug that we’re using called venetoclax that those patients can be very sensitive to.
And so, we’re looking at this not just in translocations but in sequencing for other abnormalities or gene mutations that can help guide us with these newer therapies. And you see that across all cancer types at this point. So, you can get very specific with a patient’s type of myeloma – that this drug is going to work better because you have this mutation.
So, we look at it upfront. It guides us for risk stratification: standard risk versus high risk. And then we look at it in that relapse setting. Do we have a drug or a clinical trial that this patient will respond better to because of those abnormalities?
When we’re risk stratifying, we know standard risk, medium risk, and high risk. Those are those translocations, those gene mutations, that we know about.
But newer testing, like sequencing, gives us a lot more mutations that we don’t even know what to do with them all yet.
We don’t necessarily have drugs for all of them, but it does help guide us down the road. So, right now some common are the translocations, but also deletion 17p, which we’ve known about for a while. But maybe you see a BRAF mutation, which you typically associate with other types of cancers, but we see that in myeloma as well.
So, it helps us look at is there a drug that our myeloma patient might benefit from because they have a BRAF mutation, for instance.
Essential Imaging and Chromosome Tests after a Myeloma Diagnosis
Essential Imaging & Chromosome Tests After a Myeloma Diagnosis from Patient Empowerment Network on Vimeo.
Charise Gleason, a nurse practitioner, explains why tests such as bone marrow biopsy, FISH test and full-body imaging are considered essential for patients after a myeloma diagnosis.
Charise Gleason is a nurse practitioner specializing in myeloma and serves as the Advanced Practice Provider Chief at Winship Cancer Institute of Emory University. Learn more about Charise, here.
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Myeloma Targeted Therapy: Why Identifying Chromosomal Abnormalities is Key |
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Key Considerations When Choosing Myeloma Treatment: What’s Available? |
Transcript:
Charise:
The essential testing that a myeloma patient should undergo following a diagnosis is – obviously, you’ve had those diagnostic test labs, the 24-hour urine, some scans, but the specific things that we need are a bone marrow biopsy.
That includes cytogenetics and FISH, and we can talk a little bit more about that. You also want full-body imaging. We used to always use a skeletal survey, which was an X-ray of the long bones. But, really, the standard of care now is a whole-body scan.
So, depending on what your oncologist or your institution has, that would be a full-body CT scan, a PET-CT scan, or a full-body MRI. So, one of those tests is recommended. It’s not unusual if you have a PET. Like our institution, we use PET-CT. So, for a newly diagnosed patient, we’re also going to get an MRI of the spine for a further snapshot.
What we’re looking for with a full-body imaging is we want to make sure that there aren’t any lytic lesions.
So, with an X-ray, you have to have about 30 percent bone loss before it’s going to show up on an X-ray. So, those traditional X-rays that we used to use could actually miss an active lesion. So, in that diagnosis, we want to know that there is no active myeloma. And those other scans are going to be more specific to that.
So, the cytogenetics of a bone marrow biopsy are going to tell us more about the biology of the disease. So, cytogenetics actually grows out the pairs of cells. And so, that’s why that portion of the test can take a while to get back.
At our institution, it can take two to three weeks, because you’re actually growing out those cells to look at the chromosomes. And remember these are chromosomes, or genes, of the plasma cells. And so, we’re looking for those abnormalities that might be present. So, you think about it more for the biology of the disease.
When we’re looking at FISH, we’re also looking… That test shows a little bit different. It comes back quicker. It shows two different phases of cell changes.
And so, it will tell us about chromosomes as well. But do you have any additional chromosomes – so, that would make it a hyperdiploid narrow. It tells us if there’s a loss of a chromosome – so, you’re missing one, a hypodiploid. It also tells us about translocations – so, when you’ve had a piece of a chromosome change and go to another cell. And so, that, for instance, would be like that translocation t(11;14) or translocation t(4;14). So, it’s essential to have that testing to tell us about that, because it helps guide treatment. And as we talk more about targeted therapy, these things really can come into play.
Lab Tests in Myeloma: Key Results to Monitor
Lab Tests in Myeloma: Key Results to Monitor from Patient Empowerment Network on Vimeo.
Nurse practitioner, Beth Faiman, discusses laboratory tests for multiple myeloma, including which results should be monitored closely and how different labs may vary.
Beth Faiman is a nurse practitioner in the department of hematologic oncology at Cleveland Clinic. More about this expert here.
See More From The Pro-Active Myeloma Patient Toolkit
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Transcript:
Beth Faiman:
Laboratory results can be quite anxiety-provoking for some patients and others are pretty easygoing about it. One of the most important things I share with patients whether they come to see me every month, every three months, or sometimes we share care with referral providers is always take ownership of your own care.
You are your best advocate and it’s important to find out what kind of myeloma you have and what they myeloma specialist thinks is important in monitoring your labs. So, for example, there are kappa and lambda light chains, and everybody has a different form of myeloma. Find out the best way that they can monitor their myeloma. Also, key lab results like blood creatinine level, reflect kidney function, hemoglobin carries oxygen and that’s your anemia number. So, finding out those important key lab values and keeping track of them over time can help feel — patients feel empowered often times in their care.
But with that, I always have the caveat, take the results with a grain of salt because there are lab variations within one’s own institution or when you’re going outside of institutions if we partner with care. So, that can be about 20/25 percent lab error each month depending on the test result.
Lab values can fluctuate quite rapidly. So, if I draw a serum creatinine level in the morning, and it might be high indicating kidneys might not be functioning normally, I can encourage them to have some hydration or — and then recheck that lab value and it might go down. The same with the serum-free light chains and M-Spikes.
The lab variation within a single day can be very, very, very diverse. So, it’s important to say, hey gosh, it’s abnormal one day or one hour of the day, but then the next time it can be normal. Or normal for you a well, because there are normal values for one patient that’s abnormal for the other, and vice-versa.
Essential Tests for Diagnosis and Monitoring
This resource was originally published by International Myeloma Foundation here.
Multiple myeloma tests are diverse and complex. Tests are used throughout the course of your disease — for initial diagnosis, discovering the type of myeloma you have, staging the disease, and for monitoring your response to treatment.
What Can Tests Tell Us?
Tests results are the most important tools that your doctor will use to:
- Diagnose monoclonal gammopathy of undetermined significance (MGUS), smoldering multiple myeloma (SMM), and active myeloma.
- Assess the risk of progression of MGUS or SMM to active myeloma.
- Assess the stage of your myeloma.
- Assess your genetic risk factors.
- Evaluate your response to treatment.
- Monitor remission periods and determine when to start treatment again.
- Monitor for disease-related and treatment-related side effects.
Tests for multiple myeloma patients fall into three major categories:
- Blood and urine tests
- Bone marrow tests
- Imaging studies
No Single Test Tells the Whole Story
Each test can be thought of a piece of puzzle. Only when the pieces are assembled together can a patient and their doctor make their proper conclusions and decisions. Myeloma is unique in each patient; therefore, it’s important not to compare your test results with other myeloma patients.
We encourage you to discuss all your test results with the doctor who is treating you. Your doctor will be able to put all the puzzle pieces together to put your results in context. The patterns of results viewed over time are more meaningful than any single test itself.
Save Copies of Your Test and Lab Results
It is important to request, print out, and save copies of your results. Bring a summary of results with you when you to all oncology visits or when getting a second opinion.
Variables That May Affect Your Test Results
Be aware that your lab results can be affected by many variables, including:
- other medications and supplements that you may be taking
- the amount and type of fluids you have consumed
- whether you have eaten before the test
Before undergoing tests, consult with your doctor to make sure there are no special instructions about taking certain medications, supplements, food, or drinks.
Deciphering My Lab Results
This resource was originally published by Myeloma Crowd here.
We thought it might be helpful to have a document that describes your multiple myeloma test lab results and helps identify the important markers. This document contains a diagnosis summary checklist, a treatment summary form and each lab result described and color-coded for relevance.
Download It Here:
How is Multiple Myeloma Diagnosed? Symptoms, Prognosis, Causes, Treatment, and More
This resource was originally published by Everyday Health by Pamela Kaufman here.
Last Updated: 10/11/2018
Multiple myeloma is a rare cancer that affects plasma cells.
Plasma cells, a type of white blood cell, are found primarily in bone marrow — the soft, inner tissue of bones.
Plasma cells are an important part of the immune system. They produce proteins called antibodies that help the body fight infection by attacking and killing germs.
When plasma cells grow out of control and begin to collect in bone marrow in different parts of the body, the result is multiple myeloma.
Multiple Myeloma Complications
Multiple myeloma can cause a number of complications, some of which may be very serious. These include:
- Low blood counts As myeloma cells multiply in bone marrow, they crowd out red blood cells, white blood cells, and platelets. Low red blood cell levels (anemia) can result in fatigue and weakness. A drop in white blood cell count can decrease resistance to infection. Lack of platelets can lead to significant bruising and bleeding even from minor scrapes or cuts.
- Bone and calcium issues Myeloma cells produce substances that speed the breakdown of old bone and slow the buildup of new bone. This leads to holes in bones and osteoporosis (low bone density), raising the risk of fractures. Even normal activities like coughing and walking may lead to a broken bone.
- Myeloma cells not only reduce the number of infection-fighting white blood cells, they produce a single type of abnormal antibody that does not fight infection. This antibody is referred to by a number of names: monoclonal immunoglobulin, monoclonal protein, M protein, M-spike, and paraprotein.
- Kidney damage The antibody produced by myeloma cells can build up in the blood and urine, leading to kidney problems. (1)
How Many People Get Multiple Myeloma?
According to the most recent statistics from the National Cancer Institute, almost 31,000 Americans will receive a multiple myeloma diagnosis in 2018.
That makes multiple myeloma relatively rare, accounting for 1.8 percent of all new cancer cases.
Around 0.8 percent of men and women in the U.S. will be diagnosed with multiple myeloma at some point during their lives.
The number of people diagnosed with multiple myeloma has climbed an average of 0.9 percent each year over the course of a decade, according to the most recent data.
But death rates from multiple myeloma have decreased 0.5 percent per year, reflecting improvements in treatment. (2)
What Causes Multiple Myeloma and What Are the Risk Factors?
Scientists still don’t know what causes multiple myeloma or how to prevent it. For most people who develop the disease there are no clear reasons why.
Researchers have made progress understanding the DNA mutations (changes) that turn healthy plasma cells cancerous. This is vital work that many hope will point the way to improved treatment.
Researchers have identified a number of factors associated with increased multiple-myeloma risk.
These include:
- Age Multiple myeloma is most often diagnosed in adults over the age of 65.
- Gender Men are at a slightly higher risk than women.
- Race African-Americans are almost twice as likely to get multiple myeloma as white Americans.
- Family history Having a close relative with multiple myeloma increases a person’s odds of developing it. Is multiple myeloma hereditary? Sometimes. But most people with multiple myeloma have no family history of the disease.
- Obesity People who are overweight or obese are at higher risk.
- Other plasma cell diseases Men and women with a relatively benign condition called MGUS (monoclonal gammopathy of undetermined significance) should be vigilant: Every year 1 percent of these people go on to develop multiple myeloma. Patients with a type of blood cancer called solitary plasmacytoma also have a greater chance of developing multiple myeloma. (1)
The Signs and Symptoms of Multiple Myeloma
When symptoms of multiple myeloma do occur, they may include:
- Bone pain, most often in the back or ribs (although pain can occur in any bone)
- Bone fractures
- Fatigue
- Weakness
- Frequent infections
- Numbness, tingling, burning, or pain in the hands and feet
- Excessive thirst and urination
- Constipation
- Abnormal bleeding
- Headaches
- Chest pain
- Decreased alertness
- Shortness of breath
Doctors sometimes use the acronym CRAB to describe myeloma symptoms:
- C — calcium elevation (high levels of calcium in the blood)
- R — renal insufficiency (poor kidney function)
- A — anemia (low red blood cell count)
- B — bone abnormalities (lesions) (3)
Chemotherapy Toolkit: Treatment Bag Essentials
Whether for yourself or for a loved one, these thoughtful products will help bring a feeling of preparedness.
How Multiple Myeloma Is Detected and Diagnosed
In order to make a multiple myeloma diagnosis, a medical team has a lot to consider: the patient’s symptoms, the results of a physical exam, and the findings of a battery of tests. Doctors look for telltale substances in blood and urine (calcium and certain kinds of proteins and antibodies), analyze samples of bone marrow and bone, and search for signs of disease in imaging tests such as X-rays, CT scans, and MRIs. Whatever else doctors find, a myeloma diagnosis will always involve a tumor made up of myeloma cells or at least a high concentration (at least 10 percent) of these cells in the bone marrow.
More on Diagnosing Cancer
In about a fifth of cases, doctors detect multiple myeloma during routine physical exams in patients without any outward signs of the disease. (5)
A diagnosis of asymptomatic multiple myeloma, also called smoldering multiple myeloma, does not typically lead to immediate treatment. Instead physicians often choose to take a watch-and-wait approach, performing regular blood and urine tests and offering medication or other therapies only when the cancer advances. (5)
The Stages of Multiple Myeloma and What They Mean
Staging multiple myeloma is the method doctors use to assess how much cancer is in the body and where it is. Doctors stage the disease in order to come up with a treatment plan and a prognosis (a prediction of the course of the illness).
Staging may initially involve categorizing the cancer as symptomatic or asymptomatic, since patients in the first category generally don’t receive treatment and can remain stable for many years. Doctors may also categorize the cancer as stage 1, stage 2 or stage 3 using the Revised International Staging System (RISS). The RISS looks at a number of factors, such as blood levels of beta-2 microglobulin — a protein produced by myeloma cells. (6)
Is Multiple Myeloma Curable?
Multiple myeloma has long been considered an incurable disease.
Throughout the 1990s, the average life expectancy for people with multiple myeloma was three years. Advances in medicine since then have increased median survival to more than five years, while some patients are pushing that number to upward of 10 years. (7)
A small subset of patients have been known to live in remission for decades. Are they “cured”? Doctors say it might be possible, although they remain highly cautious about making more definitive claims.
Meanwhile, new treatments are coming down the pike that hold promise to anyone facing a multiple myeloma diagnosis. These treatments aim to relieve symptoms, provide prolonged remissions, and increase the multiple myeloma survival rate.
Multiple Myeloma Treatments: Drug Therapy, Stem Cell Transplants, and More
Oncologists have many weapons in the fight against multiple myeloma. Treatment options include:
- Chemotherapy and drug therapy, including targeted drugs that home in on specific genes or proteins in the cancer
- Stem cell transplantation (in which cancerous cells are replaced with healthy cells) combined with high-dose chemotherapy
- Radiation therapy
- Supportive care to relieve symptoms
- Clinical trials of new drugs, drug combinations, or stem cell transplant approaches
More on Multiple Myeloma Treatment
The rapid pace of research means that more and more treatments are in the pipeline. Among the most promising new treatments under investigation are those involving a type of immunotherapy called CAR T-cell therapy. CAR T-cell treatments involve genetically engineering a patient’s own T cells (a type of white blood cell) to allow them to recognize and attack cancer cells.
For every type of approach, outcomes for people with multiple myeloma depend on a number of factors, including overall health and ability to tolerate treatment.
Quality of care also makes a difference. The Leukemia and Lymphoma Society emphasizes the importance of seeking out a doctor with experience treating multiple myeloma or one who will work in concert with a specialist. These specialists are usually called hematologist oncologists. (8)
Prognosis: What to Expect After Being Diagnosed
The median five-year survival rate (the percentage of people who live at least five years after diagnosis) for multiple myeloma is a little more than 50 percent. (9) But that doesn’t tell the whole story of what a person with this rare cancer of the plasma cells may experience. Life expectancy and quality of life depend on a number of factors, including a person’s age and overall health. The type of multiple myeloma also makes a difference. People with the early kind called smoldering multiple myeloma may remain symptom-free for many years before the disease begins to take a toll. Conversely, patients who have a form of myeloma with a high-risk genetic feature may have an especially poor prognosis.
Life After Multiple Myeloma Treatment
With multiple myeloma there’s no simple way to define “survivorship.” While this type of cancer is considered incurable, some patients consider themselves to be survivors if they have no signs of disease after treatment. Others call themselves survivors because they’re committed to pursuing treatment over the long term and doing whatever they can to prevent recurrence.
Managing a mix of powerful emotions — fear, hope, guilt, joy — is part of life as a multiple myeloma survivor. An in-person support group, online community, and individual counseling can help patients understand complicated feelings.
For patients who regard their illness as motivation to make positive changes in their life, survivorship can involve eating well, not smoking, limiting alcohol and managing stress. It can also entail returning for regular medical checkups and tests as well as services such as physical therapy, nutritional planning, and pain management. (10)
Additional Resources for Multiple Myeloma
If you’ve been diagnosed with multiple myeloma, there are a number of excellent resources that can help you understand and cope with your condition. Click on the link below for more information on organizations, blogs, and websites that provide a wealth of information as well as medical, emotional, and financial support for people with multiple myeloma.
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Coping With Scanxiety: Practical Tips from Cancer Patients
“Every three to four months I get a wake-up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, mentally. It takes living with cancer to yet another level of heighten sense of mortality and anxiety. So MANY thoughts and what ifs course through my brain. SO hard to shut it off.” – Katie Edick, METASTATIC AND MAKARIOS.
It may not be officially part of the medical lexicon yet, but “scanxiety” is no less real for those of us who have experienced a diagnosis of cancer. Pamela Katz Ressler, RN, MS, HNB-BC, founder of Stress Resources, describes scanxiety as “the anxiety, worry and fear that accompanies the waiting period before and after a medical test.” She says it is a common side effect of modern medicine. “As our medical system has become more technologically adept at measuring indicators of disease so too has our anxiety” she says. “Scanxiety is an unintended consequence of medical testing, yet it is one that is rarely discussed by medical professionals with patients.”
Writing in Time magazine in 2011, lung cancer survivor, Bruce Feiler, characterized scans as “my regular date with my digital destiny. Scanxiety, he wrote, arises from the feeling of “emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.”
One of the most common emotional and psychological responses to the experience of cancer is anxiety. Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer journey. Did you know that the word anxiety comes from the Latin word anxius, which means worry of an unknown event? Worry, in turn comes from the Anglo-Saxon word “to strangle” or “to choke” – which may very well convey the feeling we have right before a scan, or whilst waiting for its results.
Anxiety is a natural human response that serves a biological purpose – the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. Symptoms vary for each person. You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. Alongside these physical manifestations, you may feel irritable, angry or apprehensive and constantly on the alert for signs of danger. All of these signs indicate that sympathetic arousal of our nervous system has been activated, preparing us to stand our ground and fight or take flight and run away from danger.
Scanxiety, points out Katz Ressler, can be intense and may mimic symptoms of Post-traumatic stress disorder (PTSD). PTSD is an extreme anxiety disorder that can occur in the aftermath of a traumatic or life-threatening event. Symptoms of PTSD include re-experiencing the trauma through intrusive distressing recollections of the event, flashbacks, and nightmares. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC), points out “MRIs are very noisy – and because my recurrence was found through an MRI biopsy, I have many memories of scary results from that test.”
It’s been over ten years since I was diagnosed with breast cancer and while my scans are less frequent these days, the anxiety never fully goes away. As blogger and patient advocate, Stacey Tinianov writes, “This is reality even after almost five years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m just a woman whose body once betrayed her by growing a mass of rouge cells that, if left unchecked, have the potential to bring down the house.”
If you are facing an upcoming scan and feeling anxious about it, you may find the following tips helpful. Based on my own experience and the experience of others in the cancer community, these tips are some of the ways in which we have learned to cope with scanxiety.
1. Identify your body’s stress response
How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.
2. Pay attention to your breathing
When we are stressed we tend to breathe more shallowly. Shallow breathing, which does not allow enough oxygen to enter our bodies, can make us even more anxious. When you feel stressed, practise taking some slow deep abdominal breaths. Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.
3. Stay focussed on the present
Focussing on the past or future can increase your anxiety. Katz Ressler recommends staying focused on the present moment as a way to quieten anxious thoughts. “Methods that have proved successful for scanxiety focus on tools of resilience, often based on mindfulness strategies,” she says. “Key in these methods is to focus on the present moment and not on the outcome of a test or scan.” Focusing on each and every breath is an excellent way to begin to increase your awareness of the present moment. If you would like to try some short mindfulness meditations to increase resilience and help decrease anxiety, you will find some on Katz Ressler’s website.
4. Use visualization
By enhancing your relaxation skills, you are can lower the fight or flight response that is often triggered during times of increased anxiety. Visualization involves using mental imagery to achieve a more relaxed state of mind. Similar to daydreaming, visualization is accomplished through the use of your imagination. Karin Sieger who has recently received a diagnosis of cancer for the second time, shares this advice, “I certainly keep my eyes shut when inside the machine; focus on my breathing; remind myself this has a start and finish; and then generally try and go in my mind to a calm meadow and have a snooze. Because for once there is nothing else I can or should do for the next minutes.”
5. Practical coping tips
Karin also points to the claustrophobic feeling of being enclosed in a scanning machine as a contributor to anxiety. Stage IV breast cancer patient, Julia Barnickle recommends an NLP (Neuro Linguistic Programming) process, called the “Fast Phobia Cure” which worked for her. “I still don’t like enclosed spaces,” she says, “but I certainly don’t panic like I used to.” Blogger Margaret Fleming also recommends asking the attendants for any items that can make you more comfortable, such as ear-plugs or a blanket.
6. Break the worry habit
Worry can be a habit and like all habits can be broken. As soon as that worry voice starts in your head, examine it before it takes hold. Ask yourself, will worrying about this help me in any way? Julia writes, “For me, worrying is a choice – as is happiness. In the same way that I choose to be happy, regardless of what happens around me or in my own life, I also choose not to worry about – or fear – what might happen in the future. I tend to believe that things will work out for the best. And besides… what will happen will happen, regardless of whether or not I worry about it – so I don’t see the point of spoiling my enjoyment in the meantime. I prefer to get on with my life.” Jo Taylor, who is living with secondary breast cancer agrees. “I have taken the view that nothing will change the outcome, therefore there’s no point in worrying,” she says.
7. Create an anxiety worry period
Many patients speak about the most anxious period of time being the time you are waiting for scan results. As stage IV blogger and patient advocate, Susan Rahn, writes, “Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.”
You won’t be able to break the worry habit entirely and ignoring anxious thoughts and feelings can sometimes make them worse. It’s still important that you acknowledge your worry but not let it control your life. One tip is to designate one or two 10-minute “worry periods” each day, time to fully focus on your anxiety. The rest of the day is to be designated free of anxiety. When anxious thoughts come into your head during the day, write them down and “postpone” them to your worry period.
8. Take Some Exercise
Exercise is one of the simplest and most effective ways to reduce stress and anxiety –providing a natural outlet for your body when you are exposed to too much adrenaline. Jo Taylor, who runs an Exercise Retreat To Recovery program in the UK, finds that staying physically active is helpful. “I am still very nervous in the time between scan and reporting, “she says, “but throwing myself into work or exercise or anything else I do is helpful.”
Virtually any form of exercise, from aerobics to yoga, can act as a stress reliever. The important thing is to get moving, even if that means just walking around the block. Movement with flow and rhythm can also help calm the body and mind. Katz Ressler recommends gentle yoga and walking meditation as proven ways to decrease the stress response and increase the body’s natural calming mechanism. “Finally, remember”, she says, “while you cannot control the outcome, you can work to control the experience and that starts with building resilience.”
I hope you will find these tips helpful and if you have any other coping tips please feel free to add your advice in the comments below.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
