Family caregivers spend an average of 24.4 hours per week to take care of their sick relative. In the past, family caregivers usually remain invisible using healthcare encounters and are usually not identified as a unit of support in the health records of patients. However, in recent years, studies in the United States showed that the implementation of family-centered approach is beneficial for persons with serious illnesses as well as the caregivers, specifically in pediatric and geriatric patients. Here is an overview of its core concepts, benefits, and barriers.
Core Concepts of Patient And Family-Centered Care
The family framework is a simple, low technology approach in providing holistic patient care. According to the Institute for Patient- and Family-Centered Care, there are four core concepts of patient- and family-centered care. The first core concept is dignity and respect, which means that health care professionals must listen and respect the decisions of the patient and the family. The second core concept is information sharing meaning that patients and families should be given complete and accurate data so that they can make informed decisions. The third core concept is participation. The patients and families are empowered through ensuring they participate in the decision-making process. The last core concept of collaboration highlights the need for all individuals (patients, families, and health care professionals) to work together for the betterment of the patient.
Benefits Of Family Approach
The major benefit of this approach is the shift of the control and power of patient care from the individuals who deliver it to the ones who receive it. This approach recognizes the autonomy of patients, which is a major concept in bioethics and rehabilitation. The importance of families in promoting health and well-being of every member is also emphasized. In previous years, family-based treatment modalities such as meditation or mindfulness have been shown to have benefits for the whole family. For instance, it has been demonstrated that such approaches are effective in addressing eating disorders and depression among children.
By listening to the patients and families about their experiences and hearing what’s important to them, healthcare professionals can improve their delivery of care. In a study, researchers found that parents’ satisfaction increased as much as 70% after the implementation of family-centered care. These professionals also learn how care systems work and not just how they are supposed to work. As such, this approach is mutually beneficial to both health care professionals and patients as both of their needs are fulfilled.
Barriers To A Family Approach
Since 1993, family-centered approach has been a priority for hospitals, states the Institute for Healthcare Improvement. Nevertheless, there are numerous barriers to its successful implementation. For example, the different meanings of family-centered care in the discipline causes confusion to how it should be practiced. Moreover, the roles and boundaries of the health professionals and the family remain unclear.
Most importantly, the attitudes, values, and perspectives of healthcare professionals also affect the use of family approach in hospital settings. One of the things that influence their attitudes is their lack of knowledge of how to implement it. Some professionals also mentioned that they do not support this approach because the outcomes are difficult to measure.
The main objective of family-centered approach is to respect the patient’s decision about his or her care and to emphasize the role of the family in the treatment. While there are advantages to the approach, there are still barriers on how it can be implemented in reality. Further research is warranted to determine its effectiveness and to help hospitals transition to a patient- and family-centered approach.
https://powerfulpatients.org/wp-content/uploads/Discharge-Planning-is-a-Family-Affair.png600600PEN Editorial Staffhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-07-03 12:03:162022-11-09 15:43:42Benefits And Barriers Of A Family-Centered Approach To Holistic Patient Care
At some stage in all our lives there comes a time when feelings of sadness, grief or loneliness gets us down. It is part of being human. And after all, what’s more human than feeling down after such a life-changing and stressful event like cancer? Most of the time, we bounce back; but what happens when the blues stick around and start to interfere with our work, our relationships and our enjoyment of life?
Dana Jennings, whose writings in the New York Times about his treatment for prostate cancer, so eloquently captured the mix of feelings which cancer survivors face after treatment ends, wrote that while he was “buoyed by a kind of illness-induced adrenaline” during treatment, once treatment ended, he found himself “ambushed by depression.”
Jennings’ words will have a familiar ring to many of us who have struggled with that unexpected feeling of depression and loneliness that creeps up on us after treatment is finished. For some survivors, depression kicks in shortly after diagnosis or at some stage during treatment; for others it may ambush them weeks, months or even years after treatment ends.
What Causes Depression?
Depression is a word that means different things to each of us; people use it to describe anything from a low mood to a feeling of hopelessness. However, there is a vast difference between clinical depression and sadness. Sadness is a part of being human; it comes and goes as a natural reaction to painful circumstances, but it passes with time. Depression goes beyond sadness about a cancer diagnosis or concern about the future.
In its mildest form, depression doesn’t stop you leading your normal life, but it does make things harder to do and seem less worthwhile. At its most severe, the symptoms of clinical depression are serious enough to interfere with work, social life, family life, or physical health.
Incidence of Depression in Cancer Survivors
Research shows that cancer survivors are more likely than their healthy peers to suffer psychological distress, such as anxiety and depression, even a decade after treatment ends. Although estimates of the frequency of depression in cancer patients vary, there is broad agreement that patients who face a disruptive life event like cancer have an increased risk of depression that can persist for many years. While most people will understand that dealing with a chronic illness like cancer causes depression, not everyone understands that depression can go on for many months (and even years) after cancer treatment has ended.
The Challenge of Identifying Depression in Cancer Patients
Some research has indicated that depression has been underdiagnosed and undertreated in cancer patients. This may result from several factors, including patients’ reluctance to report depression, physician uncertainty about how best to manage it, and the belief that depression is a normal part of having cancer.
Several of the characteristics of major depression listed below– like fatigue, cognitive impairment, poor sleep, and change of appetite or weight loss—are hard to distinguish from the common side effects of cancer treatment. This makes it harder to tease apart the psychological burden of cancer, the effects of treatment, and the biochemical effects of the disease.
Are You At Risk of Depression?
Depression can occur through a combination of factors, with some of us being more prone to depression than others. Factors such as a history of depression, a history of alcohol or substance abuse, and a lack of social support can increase the risk of depression in both the general population and among cancer patients.
Even if a person is not in a high-risk category, a diagnosis of cancer is associated with a higher rate of depression, no matter the stage or outcome of the disease.
Distress over a cancer diagnosis is not the same thing as clinical depression – it is important to recognize the signs and get treatment. The first step is to identify if you are experiencing symptoms of depression.
Try answering the following two questions.
Have you, for more than two weeks (1) felt sad, down or miserable most of the time? (2) Lost interest or pleasure in most of your usual activities?
If you answered ‘YES’ to either of these questions, you may have depression (see the symptom checklist below). If you did not answer ‘YES’ to either of these questions, it is unlikely that you have a depressive illness.
Depression Checklist*
(Tick each of the symptoms that apply to you)
Trouble sleeping with early waking, sleeping too much, or not being able to sleep
On-going sad or “empty” mood for most of the day
Finding it hard to concentrate or make decisions
Feeling restless and agitated, irritable or impatient
Extreme tiredness and lethargy
Feeling emotionally empty or numb
Not eating properly; losing or putting on weight
Loss of interest or pleasure in almost all activities most of the time
Crying a lot
Losing interest in your sex life
Preoccupied with negative thoughts
Distancing yourself from others
Feeling pessimistic about the future
Anger, irritability, and impatience
Add up the number of ticks for your total score: _______
What does your score mean?
4 or less: You are unlikely to be experiencing a depressive illness
5 or more: It is likely that you may be experiencing a depressive illness.
NB This list is not a replacement for medical advice. If you’re concerned that you or someone you know may have symptoms of depression, it’s best to speak to your doctor.
Depression – The Way Forward
It’s common to experience a range of emotions and symptoms after a cancer diagnosis, including feelings of stress, sadness and anger. However, some people experience intense feelings of hopelessness for weeks, months, or even years after diagnosis. If you continue to experience emotional distress from your cancer, it’s very important to know that help is available, and to get the help you need.
The first step on the path to recovery is to accept your depression as a normal reaction to what you have been through –don’t try to fight it, bury it or feel ashamed that it is there. Think of your depression as just another symptom of cancer. If you were in physical pain, you would seek help, and it’s the same for depression. There are many people willing to help you but the first step is to let someone know how you are feeling. Finding the courage to talk to just one person, whether that’s a loved one, primary care physician, or specialist nurse will often be the first step towards healing.
The psychological effects of cancer are only beginning to be studied and understood. In time, doctors will not only treat the body to kill the cancer, but will treat the mind which suffers the consequences of the disease long after the body has healed. When you’re depressed it can feel like you are barely existing. By obtaining the correct medical intervention and learning better coping skills, however, you can not only live with depression, but live well.
A Note on Helping a Loved One with Depression
Perhaps you are reading this because you’re concerned about a loved one who might have depression. You may be wondering how you can help. For people who have never experienced the devastating depths of major clinical depression, it may be difficult to understand what your loved one is going through. Depressed people find it hard to ask for help, so let your friend or family member know that you care, you believe in them and that you’re there for them.
The best thing you can is to listen. Don’t offer preachy platitudes about things never being as bad as you think, or suggesting the person snap out of the depression. Our culture doesn’t encourage people to talk about their emotional pain. We’re taught to suppress our feelings, not to show weakness, to get over things quickly. Most people, when they feel upset, benefit greatly by talking to someone who listens with empathy and without judgment. Most of the time the person who is depressed is not looking for advice, but just knowing that someone cares enough to listen deeply can make all the difference.
*References: American Psychiatric Association. Diagnostic and statistical manual of mental disorders, 4th ed (DSM-IV). Washington, DC: APA, 1994; and, International classification of diseases and related health problems, 10th revision. Geneva, World Health Organisation, 1992-1994.
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.
Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.
Top Tweets and Advice
Care Coordination Means Everyone Is Working Together
You Are Your Own Best Advocate
Work For What You Deserve
Full Chat
https://powerfulpatients.org/wp-content/uploads/Leveraging-Social-Media-for-Patient-Advocacy-patientchat-Highlights-1.png600600Caitlin McDonaldhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngCaitlin McDonald2019-06-21 18:17:152022-02-16 15:49:51How Does An Empowered Patient Approach Care Coordination? #patientchat Highlights
A dad I know recently posted a photo and shared his excitement on Twitter about a new set up for his bike with a trailer for his son. Its overall purpose being an opportunity to do more stuff together as a family. I wholeheartedly shared in his excitement as I too had been putting money aside to find more opportunities for my own family to get outdoors more. Both of us are parents of children who were born with a rare diagnosis. Our kids have different rare diagnoses, but like all families we are eager to connect with the greater world around us and share it with our kids however we can.
My own kiddo is going to be thirteen this year, and we are at a turning point in the discussion of overall health. We are off-book and off script as there’s nothing that clinically describes this age range for his specific diagnosis. Anecdotally, he seems to be following his own trajectory for some inexplicable reason deviating from other children I know with this diagnosis. I’m at the hospital more professionally than I am as mom of a patient which to some audiences the reaction is, “Yay! Your family gets a break! So everything is fine now, right?”. The reaction from fellow parents of palliative patients is, “I’m so sorry”, because they realize the fight is over. That life is going to do whatever it is its going to do. The hospital is still there if you need them, but your frequent family vacation time at “Club Med” is to be replaced with a new family dynamic and new identity as take a go at life more on your own.
Health care is quickly deviating from textbook, generalized care to something highly individualized. This in theory is a great concept but is extraordinarily multifaceted in its impact on patients affected by rare disease. As someone who manages a support group of over 800 patients and caregivers from my home province, I find a deep desire to ask in some capacity whether we are prepared for the pace of advancement. A long-term goal I have in mind is to create a biopsychosocial assessment of the needs of families. For now, I can say for as much new information as I bring to the proverbial table, it’s so often met with, “How do I fit this into my complex world?”.
I hesitate to use the term ‘finding balance’ at all, because if there’s one thing I think many of us rare patients and families experience is more of a need to manage random health chaos. The status of my own family can shift on a dime and you have to learn to be very much ok with that because you have no other choice than to.
So how does one even begin to manage understanding how to frame your life and all the decisions you have to make? For a little over four years, I’ve been working as a parent researcher and engagement facilitator with a focus on the subject of childhood disability. One concept we often speak on is the World Health Organization’s International Classification of Functioning, Disability Health. A simplified version of a very technical document is called “The F Words in Childhood Disability”. Now these are concepts that I wish to argue merit for as a way to create form to thoughts and efforts that you are probably doing already. At the same time, it can become very validating and empowering to realize that current evidence points to the fact that you are already on the right track. These are ideas upon which a potential framework can be created in your own mind as to goals that can be accomplished, or a way to weigh decisions that need to be made. We are often so focused on the burdens of disease, that we need a compass of sorts to point us back to the idea that life is happening around us and time can often be a precious commodity. They are six words that reflect the story that’s unique to you or your family and nobody else.
Function
There is often a need to perform tasks in ways unique to their own abilities. If independence in some areas can be fostered, we need to be able to honor that.
Family
Family isn’t always about people you are genetically related to. People react to the idea of illness very differently and in some cases, you need to seek community and “family” elsewhere. Regardless, the people in your life that you surround yourself with are people that are important to you. It’s important to listen to them as they know you best.
Fitness
As a post-cancer “spoonie” myself, I often bristle a bit on this subject. Between my own struggles with energy and the physical impact of caregiving, I’ve found it difficult to find the energy to be healthy. However, your story isn’t my story and in reality it can be intensely difficult to find ways to be healthy. In the area of rare disease, I think health becomes a broader term by definition: overall health takes on many forms be it mental or physical health. We often term health as some sort of fitness guru Instagram aspiration, but sometimes overall improved health comes from even the tiniest of steps and even the little efforts deserve to be celebrated in a huge fashion.
Friends
Existing around peers can take on many forms, and in order to do so sometimes we need to be brave and reach out to others for more accessible ways to connect with friends. What can’t be ignored is a human being’s overall need to connect with other people as we learn and grow together.
Fun
In a world that can be taken up so much with appointments and treatments, its so important to stop every now and then and have fun, be silly, briefly escape the world and just plain live. Fun can take on so many different things.
Future
So much definition of future is often left to the financial planners of the world in regards to careers, academics and whatnot. Sometimes the future is only planning ahead 15 minutes at a time or a week from now. As hokey as it sounds, with age I’ve begun to see the value and emotional weight the phrase “one day at a time” holds in my life. I’ve been asked more times than I can count as to how I picture my family’s future. My response remains that I really am not gifted with that luxury, ask me what I’m working on for tomorrow.
I have seen these terms be threaded through my life in so many ways. Sometimes you are only focusing on one F word at a time and there’s no judgement in that at all. I like any other mom am someone who struggles with whether or not I’m doing a good job. I think the gauge by which I measure this is probably unique to my own personal story but I know that I am not alone in this feeling. I feel though with the F words, I have a more confident platform to stand on not to be his voice but to be his microphone. There’s so much I can’t control in life but as his mom I want to help him own every second as his life to live. So in celebration of birthday number 13, we’re taking “fun” as our next goal and bought a bike trailer too! I know he’ll love it.
Rachel Martens is a mom of a child with a rare diagnosis. She’s one with many hats in the health world in policy development, research partnership, mentorship and science communication. She’s an aspiring runner, crochet fan and enthusiastic coffee drinker.
https://powerfulpatients.org/wp-content/uploads/F-Words-in-Rare-Disease.png600600Rachel Martenshttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngRachel Martens2019-06-17 12:05:192021-07-10 20:25:47F Words in Rare Disease
In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures. I felt great and had no reason to think I had any health problems. When my doctor suggested some routine blood work, I readily complied. When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied. When the results came in, my life changed forever.
The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy. I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin. I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.
As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities. If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant. My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant. If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.
My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank. Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system. For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.
For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace. It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease. Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”
Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.
The first set of practices that sustained me was mindfulness, meditation and yoga. To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment. Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next. Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.
Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week. I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects. In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.
A second practice involved being a proactive patient. Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.
On several occasions, my proactive stance made a positive contribution to my treatment. When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect. I suggested changing the dosing schedule, they concurred, and the problem resolved. The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.
A third practice involved maintaining a regimen of physical activity. During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons. I developed a routine of walking the halls three times a day, trailing my IV pole behind me. They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.
When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls. But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.
A fourth practice involved maintaining my sense of humor. I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings. Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease. Using humor became another way of keeping the cancer at bay. It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.
Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor. These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers. In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.
A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery. Narrating my story for others required me to make sense of it for myself. The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me. While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.
I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period. This writing would eventually serve three purposes. It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.
As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival. But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.
Steve Buechler is the author of “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” which was recently selected as an inspirational “Suggested Reading” by the Leukemia and Lymphoma Society. He recently recorded a 5-part webcast series that expands on his recovery story here. Steve’s numerous blog posts, video presentations, and more may be found at www.stevebuechlerauthor.com and he is on Facebook at SteveBuechlerAuthor.
https://powerfulpatients.org/wp-content/uploads/Facing-Acute-Myeloid-Leukemia_-Notes-from-a-Survivor”.png600600Steve Buechlerhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngSteve Buechler2019-06-11 16:49:272024-01-24 14:07:41Facing Acute Myeloid Leukemia: Notes from a Survivor
Every year over 525,000 Americans experiences their first heart attack while around 795,000 people experience strokes. Of that number, 75 percent of them are aged 65 and over. Recovering from medical conditions such as these can be a long road for older people. As we age, so does our bodies and immune system and recovery can take a longer time. The process of healing and returning to optimal health can be a stressful and trying time for both seniors and their caregivers, whether they are patients that are newly diagnosed or living with it for years. By implementing simple changes, you can ensure the process is a smooth and easy one for either yourself or a loved one.
Arrange For Help Sooner Rather Than Later – Both Personal And Infrastructural
The days immediately after medical events such as strokes, cardiac episodes, and even falls can find older Americans feeling frail and with limited movement. Small adjustments to both their living environment and making help available can help them in those initial times. Standard additions such as the placement of bath rails and reorganization of items to a more accessible level can help them maintain some level of independence and prevent further harm. Slips and falls are one of the most commonly reported incidents amongst seniors in America. Around1 in 4 older Americans experience falls each year and in those times where they are in long term recovery, these chances increase sizably.
In addition to making your home accessible, be sure to plan with other family members or carers a timetable to be present and help, particularly in the early days after being released from the hospital or care facilities. This is also the point where you will need to consider whether you can provide the level of long term care that person may need and do so comfortably at home.
Weigh Their Rehabilitation Options- Care Facilities Vs Recovering At Home
Speaking of providing long term care, considering the best rehabilitation option is one of the most important decisions in the recovery process of an older loved one. While most of us prefer to age at home, in a place surrounded by family and comfort there are cases where care facilities may prove to be better medically and financially. Some stroke patients can suffer long term loss of their motor skills and require round the clock care and physical rehabilitation. This can prove to be along, tough road and requires much commitment from both the caregivers and the patient. One of the most cited reasons for families not choosing assisted living is its costs. Take the time to inquire whether their state health insurance covers senior facilities and the extent of its coverage. Only then can you align your budgetary reach and make a decision on what you can afford.
Don’t Forget Their Mental Health
Our physical and mental health are strongly linked; a decline in one can impact the other. In long term recovery for seniors, this is particularly prevalent. Approximately 15 percent of adults 60 and older deal with mental illness including clinical depression. According to the Center For Disease Control and Prevention, 1-5 percent of the senior population are affected by depression. This can be further broken down into 13.5 percent of those that require home healthcare and 11.5 percent of those in hospitals. In addition, certain illnesses can trigger or worsen these symptoms including dementia, strokes and multiple sclerosis.
For those recovering, this can stem from long hospital stays or even PTSD from the actual event such as a stroke or fall. In long term recovery, there can also be a loss of motivation and sometimes, poor mental health can be influenced by a drastic change in their lifestyle such as regularly being active outdoors. It is important that we pay attention to both mental and physical recovery as they interrelate with each other. Think of ways to keep your older loved ones recovering (or in some cases, yourself) motivated. Account for small progress and celebrate them as targets. In addition, speaking to a professional or even confiding in a family member can be beneficial to them getting their thoughts out. While the way life may look may have changed, its new routine does not necessarily have to be viewed through a bad light. Establishing hobbies and a strong support network for senior citizens can prove invaluable during this time.
https://powerfulpatients.org/wp-content/uploads/Seniors.png600600PEN Editorial Staffhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-06-07 16:17:502022-11-08 13:58:01Helping Seniors With Long Term Recovery: Tips For Carers To Make The Process Easier
Dr. Daniel Pollyea, an AML specialist, dispels common myths around the causes and symptoms of AML and shares advice so that you can identify credible resources for information. Download the Program Guide here.
Dr. Daniel A. Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center.
I’m Ross Reynolds. Today we’re gonna be debunking some common misconceptions about the causes and symptoms of AML.
And joining me is Dr. Daniel Pollyea. Dr. Pollyea, could you introduce yourself?
Dr. Pollyea:
Yeah. Hi. Good morning, everyone. I’m Dan Pollyea. I’m an Associate Professor of Medicine here at the University of Colorado, where I am the Clinical Director of Leukemia Service.
Ross:
I wanna emphasize to you that this program is not a substitute for medical advice, so be sure to consult your healthcare team when it comes to solid information about it. But you will get some background that I think you’re gonna find useful. And you might have some questions as we go along.
Dr. Pollyea, let’s start out with the basics. What are the causes of AML?
Dr. Pollyea:
Yeah. So, Acute Myeloid Leukemia, it’s a disease, a cancer of the bone marrow.
And it’s the result of an accumulation of mutation and chromosomal abnormalities that affect the DNA of a precursor cell in the bone marrow, otherwise known as a stem cell.
And those abnormalities accumulate until that cell can no longer properly mature, and it also can’t properly die. And so, a cell like that just makes copy after copy after copy of a cell until it crowds out the whole bone marrow with these sorta useless, immature cells.
And the end result of that is the failure of the bone marrow, which causes all of the problems associated with this disease. So, biologically, that’s sort of what happens to make this disease occur.
Ross:
What are some of the myths that you hear from patients that come in and they say, “Oh, this must’ve caused my AML,” but you have to tell them that’s not so?
Dr. Pollyea:
Right. So, I mean, this is one of the most frustrating issues for patients and their families after diagnosis. I mean, it’s a rare disease, only about 30,000 cases a year in the United States. And so, trying to associate a rare disease with external or environmental factors is difficult to impossible. So, although there are a variety of exposures that probably contribute to this disease, we have very little understanding of what those exposures typically are or how that all works.
So, there’s a few things that we know pretty well; large doses of radiation, either associated with like industrial accidents like the Chernobyl disaster, or some of the radiation therapies that patients receive for other types of cancer. Other types of chemotherapy that are used to cure other cancers can contribute to this disease in later years.
We know that there are certain precursor conditions that can evolve to AML, so a person with myelodysplastic syndrome, for instance, has a fairly high chance of someday evolving to develop Acute Myeloid Leukemia. But beyond these sort of a few associations, there isn’t a whole lot that’s known or proven.
Ross:
Now there is radiation associated with X-rays, and some people think that X-rays can cause AML. Is that true?
Dr. Pollyea:
Yeah.
So, I mean, I think a priori no because millions of people get X-rays every day, and only 30,000 people a year get AML. So, clearly it’s not a simple association between getting an X-ray and developing AML. But I think that there is an unknown interaction between environmental exposures and a person’s individual genetic makeup that makes a person more or less susceptible to developing something like AML with respect to exposure to the environment or X-rays and things.
So, while you cannot say that getting an X-ray will lead to AML, certainly there are some people who are more sensitive to the damage that’s done by something like an X-ray. And so, the best course of action is to be cautious and judicious about your exposure to these things, but not to not get these things when they are medically necessary.
So, that’s the challenging balance.
Ross:
Here’s something else we’ve heard, that weed killers can be a risk factor for AML. Is that true?
Dr. Pollyea:
I mean, I think there’s a lot coming out now about weed killers and their association with other types of cancers. Again, I go back to the limitation we have in that in only 30,000 people a year in the United States get AML. Millions of people are exposed to weed killers.
We’re statistically never going to be able to make a clear association. I think that there are certainly some risks for some people. Whether you’re that person who’s more susceptible to developing leukemia or any other cancer because of exposure to a weed killer is impossible to know.
So, like all of these things, I think the advice we have is you have to live your life. You have to do your best to sort of avoid things that you can avoid that you think would be… Or that may cause problems. But not to let those things prevent you from living a normal life.
I know that’s not a satisfying answer, but at the moment that’s the best answer we have.
Ross:
Is formaldehyde exposure another risk factor for AML?
Dr. Pollyea:
Yeah. We think that it is, and kind of along the lines of benzene. But, again, we think that those studies that have shown those types of association show it in very high amounts, amounts that most people in this country would not be exposed to. But I do think, or we do think that there is something to that, to formaldehyde somehow contributing to this.
Ross:
What’s the difference between a risk factor for AML and a cause of AML?
Dr. Pollyea:
Yeah. So, I think risk factors by definition are things that may contribute to AML. And a risk factor for AML by that definition could be walking down the street and having some exposure to radiation from the sun. A cause of AML is something that is a much more solid sort of well-understood factor.
Like I said before, having myelodysplastic syndrome, there is a high chance that that can evolve to Acute Myeloid Leukemia. And if that happens then the MDS, the myelodysplastic syndrome, could be considered or would be considered the cause of your AML. So, very, very different in terms of the amount of evidence that goes into making those determinations
Ross:
Is there a genetic component to this? Can this run in a family?
Dr. Pollyea:
Yeah. So, this is a disease of the genome.
So, I mean, in a lot of respects it is a genetic disease. But the question is very different when you ask is this an inherited genetic disease? Is this disease due to a gene that I inherited from a parent or could pass along to a child?
For many, many years, the answer from the medical community was, “No.” This was not considered to be a disease that clustered in families or that could be inherited. We now know that that’s not necessarily the case. There are some very rare cases where this does seem to travel in families or cluster in families. And we’re now beginning to understand who those people are and what those genes are.
But the vast majority of people with this disease did not inherit a gene to contribute to it and cannot pass this along to a child. This is a random, spontaneous event that occurred within one person’s own body and is not traveling within family. So, we’re learning more and more about this, but really, the vast majority of this is not an inherited genetic condition.
Ross:
You’ve mentioned gene mutations. What mutates a gene? What causes that to happen that could lead down the line to AML?
Dr. Pollyea:
Yeah. Yeah. That’s a great question. Most of the time we do not know the answer to that. These gene mutations occur spontaneously, randomly, and we don’t understand why they happen when they do happen.
And I know that’s, again, not a satisfying answer. It’s very frustrating, particularly patients come in, and, “I’ve lived a healthy lifestyle. I’ve done everything right. I exercise. I eat right. How could this have happened?”
These are things that for the most part are out of the control of a person. These aren’t impacted by your diet or your activity levels, what you eat or don’t eat, what you do or don’t do. That’s a real frustration. In the end, in almost all cases we don’t know or understand why these gene mutations or these, I call them mistakes in the body, occur when they occur. We don’t understand them.
And, Dr. Pollyea, someone asked if benzene can be a risk factor for AML.
Dr. Pollyea:
Yeah. So, benzene is one of the sort of rare environmental exposure associations that we do have clear associations with AML.
But the level of benzene that a person would need to be exposed to is really something that hasn’t been seen in this country in a very long time.
We’d be talking about like an industrial accident type exposure in almost all cases, so being exposed to a cleaning solution or some other fairly minor exposure to benzene, we don’t think is enough, in most cases, to prompt this disease. But benzene in very high doses, like an industrial accident, yes, that is something that we understand can certainly contribute or cause AML.
Ross:
Autoimmune diseases, such as arthritis, can they increase the risk of AML?
Dr. Pollyea:
Oh, boy. That is a really interesting one. So, there are papers in the literature that do support those associations. And I know in my own practice I certainly see that trend. So, I do think that there is something there. There is a proven association between autoimmune conditions and myelodysplastic syndrome, which I said before can be a clear precursor condition to AML. So, certainly, that is an association that is a possibility.
It can be a little difficult to tease out whether it’s those diseases that are associated with ultimately developing AML, or the treatments that people get for some of those autoimmune diseases. Those treatments can modulate the immune system in certain ways that may, in fact, contribute or drive the disease. So, that’s a difficult thing to tease out.
But in general terms, yes, I think there are some associations. Now not by a long shot everyone with an autoimmune disease gets AML. It’s a teeny, tiny fraction. But I think there is an association there.
Ross:
How easy is it to diagnose AML?
Dr. Pollyea:
Well, I mean, I think there’s very clear diagnostic criteria for AML. But I guess that doesn’t really answer the question. And we certainly have patients who come to us after many months of frustration without a clear diagnosis.
So, those scenarios can play out. Many times AML’s a very dramatic presentation, so people get very, very sick very, very quickly with extraordinarily high white blood cell counts and suppression of all the other blood counts that come from the bone marrow like red blood cells and platelets.
In those cases it’s pretty clear that there is a type of acute leukemia going on. There can be some difficulty distinguishing Acute Myeloid from Acute Lymphoblastic Leukemia; those are sort of like cousins, but very different and treated differently. So, it kinda runs the gamut. I mean, it can be pretty clear, but it’s sometimes missed, so yeah.
Ross:
This is a great lead-in to my next question, which is about the symptoms of AML. What should be the warning signs that this might be something you need to get looked at?
Dr. Pollyea:
Right. So, at presentation, the main symptoms are reflective of the fact that the bone marrow, the organ that makes all the cells of the blood, has failed.
So, that can cause severe anemia. Signs of anemia: a white sort of appearance, feeling dizzy or lightheaded when standing, short of breath, weak, tired, fatigue. Those are all pretty clear presenting symptoms for AML. Because the bone marrow also is responsible for making platelets that clot the blood, some people will present with a bleeding complication, or a very subtle rash made up of these particular red dots. We call that a petechial rash. And that rash can come on when the platelet count gets very low.
Sometimes a person will present with an infection or infections that don’t go away or don’t clear because of decrease in white blood cells, the infection-fighting cells of the bone marrow. Those are made in the bone marrow and can fail in the setting of this disease. So, those are the most common symptoms at presentation, symptoms that are reflective of bone marrow failure.
Ross:
You mentioned that sometimes the presentation could be very dramatic, and it sounds like the symptoms are very severe, very quickly. Is that always the case? Is that often the case?
Dr. Pollyea:
That is the case in, I would say, a minority of times. That’s usually the case. It’s more often seen in younger patients with AML. Typically, older patients with AML have a more smoldering course and a much less dramatic presentation, although this sort of very dramatic and dangerous presentation can happen in older patients, but it’s probably something like a third of the time that those very dramatic and medical emergency presentations occur.
Ross:
How important is early diagnosis?
Dr. Pollyea:
Well, I mean, it’s crucial. I mean, in particular in those cases where it’s a very dramatic and proliferative diagnosis, or presentation. A quick diagnosis and recognition of this condition is very important because the sooner a person starts effective treatment the better the ultimate outcome is.
I would say in general terms that applies to all AML patients, but certainly there’s some degrees of variation. So, there’s some AML patients that when I hear about their case on the phone from a referring doctor, it’s appropriate to see them next week in the clinic.
So, it’s not always a medical emergency, but we would never, even in those next-week-in-the-clinic patients, this isn’t something that can wait for weeks or certainly months. This is something that needs to be addressed fairly quickly.
Ross:
What are the best ways to manage those symptoms?
Dr. Pollyea:
Right. So, I mean, at presentation, all those symptoms, the best way to manage those are to start treatment as quickly as possible. So, impacting the underlying cause of this disease is the most important and critical factor to getting a person feeling better because all of these problems stem from the disease in the bone marrow, and so everything else that you do to sort of help a person’s symptoms are Band-Aids when you’re not talking about getting to the root cause.
So, that’s at presentation. Now once we start treatment, there are many potential side effects to any number of treatments. And it all is dependent on what treatment you’re getting and other things about you that will make this a significant problem in some cases. And in that setting, we do have ways that we can aggressively manage a person’s side effects.
Ross:
Can you manage all of the symptoms? Or can people still be experiencing symptoms even after they’re in treatment?
Dr. Pollyea:
Absolutely. So, a person with this disease, depending on how long they’ve had it and some of the features, may not be feeling back to their baseline self for potentially weeks or months after treatment starts in the best-case scenario. So, that can be very frustrating, but a person needs to sort of be able to continue to have a good outlook and stay positive.
Because we are able in many cases to make a big impact on this disease and return a person to their pre-disease quality of life.
Ross:
What are some of the myths that you hear, Dr. Pollyea, about the treatment? Some things that people come in to you saying they think that it helps, but there’s no science to back that up?
Dr. Pollyea:
So, myths about treatment, so many people have a lot of preconceived notions about the intensity of a therapy that they’re going to be asked to withstand. And although sometimes we do treat this disease very intensively, that’s not always the case, and now we have some very effective lower-intensity regimens that can be used in a variety of different scenarios.
There are a lot of people who have a lot of preconceived notions about a stem-cell transplant or a bone-marrow transplant and whether or not they would be eligible for this based on maybe what they’ve heard from friends or family, or what they’ve seen in the internet.
And those are often incorrect. And so, keeping an open mind about treatment options, and discussing those in detail with your doctor are really, really important.
Ross:
You mentioned sometimes it presents in young people, sometimes in older people. What’s sort of typical?
Dr. Pollyea:
This is a disease of predominantly older patients, so the median age of presentation is 68. So, that means that over half of the patients are over 68 years old at diagnosis. So, while this does happen, can happen in younger patients, that’s really an unusual situation. This disease is, like I said, it is predominantly a disease of older patients.
Ross:
There are some patients who I understand think that supplements can deal with the symptoms of AML. Is that accurate?
Dr. Pollyea:
You know, I mean, I think the supplement question is always a challenge. A lot of these supplements, or most of these supplements have never been tested with the rigor of treatments that we’re accustomed to in the medical establishment.
That being said, I won’t deny that some of the supplements can help patients based on what patients’ experiences are and what they tell me. I think what’s really important is just be very open and honest with your doctor about the supplements that you’re taking or want to take to ensure that there are no sort of unanticipated interactions with treatments.
Because I think most doctors are very open to having their patients care for themselves in the ways that they’ve become accustomed to, and they know their bodies very well, and we’re very open to that. But there are sometimes that a drug or a supplement might have a bad interaction with the treatment.
And so, a good example in my practice is antioxidants. So, there’s a lot of literature, a lot of interest in antioxidants as cancer-prevention treatment.
And a lot of that is not well-established, but still I don’t see much harm. But when it comes time to treating a cancer, that’s a very different situation. When we give a patient treatment to try to kill the cancer cells, many times we’re trying to provoke oxidation. That’s part of how these drugs and these treatments work.
So, if you’re taking those treatments, but also at the same time taking antioxidants, there’s the potential you could sort of be cutting your therapy off at the knees, fighting it with one hand behind your back. So, for the period of time when my patients are getting an active treatment, I ask that they don’t take it antioxidant.
And they can resume that in the future in the hopes of preventing another cancer. But the time to prevent with an antioxidant isn’t appropriate when you’re dealing with an active cancer. So, that’s just one example.
Ross:
Fatigue could be a symptom of AML, but there are a lot of causes of fatigue.
How do you differentiate between something that really could be AML and something that isn’t?
Dr. Pollyea:
Yeah. That’s a challenge because I think these are, as I said, older patients. And older patients have a lot of other medical problems. And older people get fatigued, just that’s unfortunately part of the normal aging process. So, we would usually make an assumption that a person’s fatigue and diagnosis is due to the leukemia, the anemia as a result of the leukemia.
But as we successfully treat a patient if they are responding based on their numbers and other objective criteria, but the fatigue is not improving then I think that’s where we would start to look at other contributing factors, and there can be many, so having an open mind at that point is important.
But at the beginning, this is such a monster of a disease, it’s so overwhelming, I think the focus is usually on assumption that the fatigue is due to the disease or to a treatment associated with this disease.
Ross:
This question: is loss of appetite a symptom of AML?
Dr. Pollyea:
Yeah. I definitely see that, hear that, so sometimes people come in and they say that. Sometimes it may not be a loss of appetite, but an extreme weight loss, so a lot of different types of cancer, including AML, can cause that, just basically unintentional weight loss.
A person’s not trying to lose weight. They’re eating what they think is their normal amount and they’re losing tremendous amounts of weight. So, those are both potential presenting symptoms with AML. And loss of appetite, unfortunately, can be associated with some of the treatments for this disease. And taste changes, things not tasting good, can all contribute to that as well, so those are all challenges that our patients face.
Ross:
How important is to get a second opinion? I mean, are all doctors like you pretty much on the same page when it comes to symptoms and treatment?
Dr. Pollyea:
So, this is a challenge. So, the answer to the second question first is unfortunately, no. A lot of this hasn’t quite been standardized. And some doctors, oncologists, cancer doctors, they’ll predominantly be treating the things that are common: colon cancer, breast cancer, prostate cancer. And they will probably only have a few cases of acute leukemia a year.
And so, their approach to this is going to be different than somebody who spends all day seeing patients with AML and thinking about AML.
So, a second opinion is a very nice thing to be able to do. The problem with this disease is that most times it doesn’t afford that opportunity. So, with other conditions you have some time to go out, read about it, talk to some different doctors, get a good plan together.
With AML, often that’s not a possibility. A person is so urgently sick that you have to sorta deal with the resources where you are. The best recommendation I have there, if you do find yourself in a situation where there’s not a lot of expertise is to ask your doctor to just call somebody in the region or email somebody in the region who may have that expertise.
And most doctors all over the country have that sort of resource or partner that they will go to and talk the case through with them, and maybe a transfer to one of those high-volume centers is appropriate.
And maybe that’s not a possibility or appropriate, but maybe you would benefit from just talking… Maybe your doctor would benefit from talking this through. But in cases where it’s not such a dramatic presentation, then yeah, for sure, I think a second opinion can be appropriate. But this isn’t something that can be sort of drawn out for long period of time.
Ross:
You know, when you find out something like this, your tendency might be to jump on the web and start searching for AML. How do you vet those sources that you look at? How do you figure out that their – what would be a sign that they’re bogus sources?
Dr. Pollyea:
Yeah. I mean, I think this field is so rapidly changing and the treatment that we have, that I would, for the most part, assume that what you’re finding on the web is not relevant and is not an up-to-date resource. So, the resources that I listed, the NCCN, UpToDate, the Leukemia & Lymphoma Society, I should mention.
A very important resource that has up-to-date information, and they have even phone numbers for patients and their families to call to get connected with the proper people in a particular city, so that is a really important resource. But I’d be really, really cautious about what you find on the internet because things are changing so fast in this field. There’s a lot of outdated and misinformation on the internet.
Ross:
Well, then there’s outright scams. One of the things you mentioned before we went on is be cautious if someone’s asking you to put money upfront, or if it’s a nonmedical facility. What are some things that people should watch out for?
Dr. Pollyea:
Yeah. So, one of the things that is so important in our area is clinical trials and participating in clinical trials. Patients who opt to do this and receive experimental therapies can sometimes get the treatment of the future, get a drug that’s not currently available through the FDA, but may have a lot of promise.
And this is the way that we fight this disease. We’ve recently had an onslaught of approvals for AML and that’s because the patients being willing to participate in sanctioned clinical trials. So, participating in a sanctioned clinical trial is crucial, and it’s always a recommendation of all leukemia doctors.
When you participate in a conventional clinical trial, you’re asked to sign a consent form that explains what you’re doing and why. There is a confirmation that this has been vetted by an institution’s regulatory board that is prioritizing the safety and well-being of you, the patient. This has been approved by the FDA as a clinical trial. Nobody would ever ask you to pay money. That’s not ethical to participate in a clinical trial. Insurance covers whatever standard of care. And the clinical trial covers anything that isn’t.
So, if you find yourself in a situation where you’re not being asked to sign a consent form, where a clinical trial has not been reviewed by a regulatory board, where your doctor is not a leukemia specialist, where the FDA has not sanctioned the treatment, all of those are alarm signs.
Because there are people out there that are preying on patients in a desperate situation, a very difficult time in their life, and giving them sort of false hope and leading them down paths that are not legitimate.
One easy thing to do to sorta check to see if a clinical trial is legitimate is to go onto clinicaltrials.gov.
This is a resource set up by our national healthcare system that now feeds in every legitimate clinical trial from all over the world, needs to be registered on clinicaltrials.gov. So, if you can’t find your clinical trial on clinicaltrials.gov, I would have a lot skepticism and caution about that.
Ross:
Like what advice do you have for people when they’re first diagnosed? What are the first things they should try to do?
Dr. Pollyea:
Yeah. I mean, that reaction is totally normal and natural. I mean, many times these people are perfectly healthy or have been perfectly healthy, and this news is a complete shock.
And so, it is normal and appropriate to have some period of grieving for the healthy life that you are losing. But I would also, while giving yourself that time to grieve, first, draw on your support system, your family, your friends. Allow them to help you. Accept that assistance that they have. And to be optimistic because we are getting so much better at treating this disease.
I had mentioned before, there has been an onslaught of approvals for drugs in this area the likes of which hasn’t been seen in decades. We have new tools and weapons in our arsenal that we couldn’t have dreamed of even a few years ago.
We in our community are very excited and hopeful about the future and we hope that that will translate ultimately to patients, but being depressed or being down, being scared, all of that is normal.
All of that is expected. Anyone would feel like that. Allowing yourself to have those feelings and emotions is important, as long as it doesn’t get in the way of doing what you need to do to fight this disease.
Ross:
It sounds like you’re hopeful about new treatments for the disease. How about a cure? What’s the science? What’s the medical science say about that? Are we getting any closer to that?
Dr. Pollyea:
We are getting closer to curing this in more cases. So, like I mentioned before, as bad as this is, we can already cure some subsets of patients. There’s one type of Acute Myeloid Leukemia called Acute Promyelocytic Leukemia, APL. It’s an uncommon form of AML, less than 10 percent.
But we can cure close to 99 percent of people with APL. And APL, 15 years ago, was universally the worst form of acute leukemia to get. So, that dramatic 180 that we’ve seen in APL, we are hoping to translate into other forms of AML.
Some other forms of AML have cure rates as high as 50 percent, 60 percent, 70 percent in the right setting. Sometimes we can cure patients with a stem cell transplant fairly reliably. So, we are very, very hopeful about our ability to continue to make progress and cure more and more and more of these patients. That’s the future that we see.
Ross:
Dr. Pollyea, thank you so much. And thank you so much for ending on such a positive note. We really appreciate it. And thank you for joining us for this program today.
To learn more about AML and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Ross Reynolds. Thanks for joining us.
https://powerfulpatients.org/wp-content/uploads/Pollyea-1.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-06-05 15:38:122022-09-08 12:04:58Fact or Fiction? AML Causes & Symptoms
We don’t always talk much about how to talk to each other when illness comes calling. People tend to feel awkward and uncomfortable, often blurting out words that are meant to be encouraging and helpful, but end up being exactly the opposite. Many people just don’t know what to say but, more importantly, many people just don’t know what not to say. Let’s start the conversation with some of the most common comments and why you shouldn’t say them.
The Positive Attitude Comments
These comments, on the surface, seem harmless enough, but they tend to minimize what the person is going through. Comments such as, Be strong, You’re so Brave, Be sure to pray about it, orYou’ll beat this with a positive attitude, oversimplify the challenges of being sick and undergoing treatment. While it’s nice to be hopeful, no matter how positive or prayerful he or she may be, there is no guarantee that the person is going to “beat it” or get well and people who are sick don’t need the added pressure of staying strong and brave through all the ups and downs of their illness.
The Grander Plan Comments
Sometimes, when the people we love are sick, we want an explanation or want to assign some sort of meaning to it, but when faced with a scary diagnosis your loved one may not be receptive to your philosophical approach. Comments that include, God has a plan for you, Your illness happened for a reason, or You must have something to learn from this experience, can imply that you think the person is supposed to be sick and that can come across as pretty insensitive.
The Comparison Comments
There are as many ways to be sick as there are people who are sick and just because you know two people with the same diagnosis does not mean that they will be sick in the same ways. Comments along the lines of, I know someone who had your exact same illness and had it so much worse than you and then they fully recovered, just aren’t helpful. Your loved ones need your support and comparing them to others is not supportive.
The Dismissive Comments
When someone is going through something difficult it’s natural to want to try to cheer them up by pointing out a silver lining, but unfortunately that strategy can backfire. Comments like, You don’t look sick, It could be worse, and You got the good version of your illness, are dismissive and insulting. People who are sick aren’t able to ignore the impact of their illnesses, and the people in their lives shouldn’t either.
The Advice Comments
Chances are, if you have a friend who has been diagnosed with an illness, you will want to do whatever you can to help, including offering advice. While your intentions are good, your words might not be appreciated. Saying things like, You should practice gratitude, You shouldn’t use your illness as a crutch, and Maybe you should change your diet and/or exercise routines, are comments that, instead of being helpful, tend to imply that the person is somehow to blame for her illness; if only she would follow your advice she wouldn’t be sick.
So, what can a well-meaning friend or loved one say? Most patients prefer honesty over cliches. Simply stating, “I’m here for you,” goes a long way. And, if you feel flustered, it’s okay to say that you don’t know what to say, but that you would like to help.
This post was inspired by one of our Empowered Patient Chats. You can find the schedule of upcoming chats and join the conversation here.
Jennifer Lessinger is a professional writer and editor who learned the value of patient empowerment during her struggle with a hard-to-diagnose and complex endocrine disorder.
https://powerfulpatients.org/wp-content/uploads/What-NOT-To-Say-When-you-Dont-Know-What-To-Say.png600600Jennifer Lessingerhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngJennifer Lessinger2019-06-03 16:41:572019-11-12 11:09:04What Not to Say When You Don’t Know What to Say
Patient advocacy involves sharing your unique knowledge and experience of a disease or condition with the ultimate aim of raising awareness and influencing people to create a desired change. An effective advocacy message is credible, clear and convincing. When it comes to creating content to support your message, the type of content you create matters.
In an age when people’s attention span averages 8 seconds (that’s shorter than a goldfish!) visuals are memorable and effective because they help people process, understand and retain information more quickly. Furthermore, in an increasingly crowded social media landscape, images can break through the online clutter so more people can find your message.
6 reasons why visual content is effective at getting your message across
People are drawn to images. Eye-tracking studies show people spend longer looking at images on a website than reading text.
People connect more emotionally with images than text.
Our brains process images faster – up to 60,000 times faster than text.
We remember pictures better than any other stimuli. According to neuroscientist, John Medina, we will remember 10 percent of information three days later. But if we add a picture recall goes up to 65 percent.
Images are a universal language. They can be understood regardless of language differences.
Images are shared more often than text only posts. Visual content is more than 40X more likely to get shared on social media than other types of content according to research by Buffer.
How to create your own eye-catching visuals
It used to be the case that to create graphics you had to have graphic design skills, but now any one of us can design eye-catching images using a variety of free and easy-to use apps and online tools. Below you’ll find listed some of my favorite sites which I use to create professional looking graphics – without spending a cent.
Canva is one of my every-day go-to tools when I am creating visuals. Whether you want to create a Twitter post or Facebook header image, you can do so quickly using Canva’s drag and drop editor. Select from a number of pre-set designs or create something from scratch. It has a multitude of layout options, fonts, images and illustrations to choose from. You can also add elements such as custom icons, fonts, charts, and illustrations.
Quotes Cover turns quotes or short text into images for social media. You can also use it to create high-resolution images for posters or other print design. Simply enter your quote or text and then choose your preferred design elements, such as font, shadow effect, and color.
Stencil is a super quick and easy way to create graphics. It gives you access to 860,000+ background images. You can add whatever text and/or graphics you’d like to these and directly share them on social media. If you like sharing quotes on social media you can take advantage of their ready to add quotes feature.
Easil is an online graphic design tool with pre-made templates that you can adapt in seconds with simple drag-and-drop tools. It’s especially useful for Instagram and Facebook stories.
Infographics are a great way to present your data in a creative and visually appealing way (see this infographic created by metastatic breast cancer advocate, Jo Taylor, to raise awareness of the signs of secondary breast cancer). To create your own infographics, use a tool like am.
Use Screencastify to create screenshots. This is one of the easiest ways to create images to simply and clearly explain a concept. I also use Snagitand Awesome Screenshotto create my screenshots.
Social Media Resizer is a useful tool to optimize your images for each of the social media sites you are sharing on. If you don’t size your images correctly for each social network, people won’t be able to see or read them clearly.
Where to find the best images for your graphics
I’m sure you already know that you can’t simply use pictures that appear on Google’s image search. Instead, you need to use a site that provides images licensed as “Creative Commons” — this means the pictures are completely free to be used for personal purposes. The following list of image sites are all great sources of Creative Commons (CC) images.
Flickr is a popular photo sharing platform that allows users to store, sort, search, and share their photos online. It includes a section for photos that have been shared with a Creative Commons license.
FreePik offers users, high quality graphic designs and illustrations. It operates on a freemium business model which means, the majority of the resources offered at Freepik can be used for free, only having to credit the author of the illustration to Freepik.
Pexels provides over 3,800 high resolution photos, collated from other free image sites — making it one of the largest free image directories. Pexels has also added a large library of stock videos to its site also under the CC license.
Pixabay hosts over 650,000 free stock photos, vectors, and art illustrations free of copyrights under Creative Commons. The site also has a collection of stock videos. On the home page, you’ll find a small, curated collection of images and a search bar for more targeted results.
Unsplash gives you access to a bank of 50,000+ free-to-use photos. You can subscribe to receive ten new images every ten days directly into your inbox.
The New York Public Library This site is a living database with new materials added every day, featuring prints, photographs, maps, manuscripts, streaming video, and more.
With so many tools out there, there is no excuse for poor-quality visuals. Whether it’s a Facebook cover photo, a blog image, or an infographic, there are tools for every skill level. Experiment to find which tools work for you and use them to add more visual appeal to your social media campaigns.
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.
https://powerfulpatients.org/wp-content/uploads/blogging.png600600Marie Ennis-O'Connorhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2019-05-28 15:45:022022-11-08 14:07:31Patient Advocacy: How to Create a Visually Compelling Message
Nothing in life can ever prepare you for the news of a life changing illness of any type. This was the case in 2006 when I was diagnosed with Complex Regional Pain Syndrome or CRPS for short. A rare neuro-autoimmune disease that causes constant chronic pain and can also affect the immune system, skin, muscle, joints, and bones it is known as the most painful chronic pain condition there is. The other name of which people refer to CRPS is “the suicide disease”, for which no explanation is really needed.
I live in Regina, Saskatchewan. If you don’t know where that is that’s in Canada. As a happily married father of two very special girls, family life was everything and more leading up to diagnosis. I held a position in senior management with a large company and my wife had decided to leave nursing to pursue her desire of being a stay at home mom. Life was good! Then our world was suddenly flipped upside down as a simple surgery to remove a cyst in my left wrist went really wrong. Immediately after the surgery I started experiencing a burning in the arm. Not to mention the severe pain and swelling that was going on. Something was very wrong and the pain getting more unbearable by the day.
This would set off almost an almost two year journey into trying to figure out what was causing such horrific pain. I also began to display numerous other symptoms associated with CRPS. Symptoms like sensitivity to touch and temperature, waxiness of the skin, hair loss, and disfigurement to name a few. Eventually, I would visit upwards of twenty physicians being tested for every disease you could think of. Yet no physician was able to make any form of a diagnosis. Without answers trying to treat this disease was difficult. Eventually, I was unable to use my hand at all, and the pain left me unable to function on most days. So I would be forced to go on permanent disability.
After virtually exhausting all the resources within Saskatchewan I would have to seek help outside the province. With paperwork already filed with the Mayo Clinic and preparations being made to go, we received a phone call from a friend who is a physician and knew of a specialist who specialized in chronic pain. We flew out to Vancouver, B.C. where the specialist was able to make the diagnosis of CRPS and tell me there was no cure, and that there was very little he could do to treat me. As I walked out of his office I remember being hit by a wave of emotions! Suddenly everything was becoming so real. Things like fear and anger were trying to take over my mind. I didn’t know what to feel or where to turn next.
As if this wasn’t enough, after an injury to my ankle CRPS spread into my left ankle and leg. This would eventually mean that I would need to use a cane to walk at all. To say the journey up until this point was frustrating is an understatement! Not wanting to focus on the negative however I remained optimistic in my pursuit to find the help I needed. Through a series of tests that I would have in order to try and manage the pain in my leg, I would finally find a specialist who could help with a treatment plan.
It had been almost two years up until this point but I finally felt as if there was a little bit of hope that something could be done to help me manage this disease. I had finally been referred to a neurologist who works with a small team of professionals who worked with CRPS patients. This is the part of my story that I get so frustrated with because we had gone full circle only to end up right back here in Regina. Had other physicians or specialists been more aware of CRPS then quick diagnosis could have happened.
It was refreshing finally having a team of healthcare professionals who truly understood what I was living with. The goal was to try and help me gain back a quality of life I had lost and maybe more. So over the course of the next several months I would form my treatment plan which was to be a combination of medications and surgically implanted neuro-stimulators. After ten major surgeries and extensive physiotherapy I started walking short distances. I also started working with a psychologist to try and help with aspects of my mental health that I was struggling with. These were both positive steps and gave me the motivation I needed to keep moving forward.
As I started coming to terms with everything I was going through with this disease I began to see that I didn’t have to let it hold me hostage. Sure, things might be good one day and bad the next but I could chose to be positive and move forward to the best of my abilities. I had to ask myself a really hard question. Was I going to let CRPS define who I am or what I can do with my life? There was still so much about my life that was so good! I was just having trouble seeing that through all the emotions. Once I figured all of that out, it made moving forward so much easier. It was at this point that I decided to start using my story to help others and to advocate and raise awareness.
There are so few resources available to those of us struggling to find diagnosis, treatment, or even support programs with a rare disease like CRPS. So in the middle of the night I wrote a letter to our Premiere outlining my story, similar to the one here asking him to declare Nov 2 CRPS Awareness Day in the Province of Saskatchewan. The goal of this was just to do my little part here in my part of the world. Before long this was in place and I now have a yearly event taking place. Right here in my city we have had Feb 28 declared Rare Disease Day, and I have started a Peer2Peer support group through the Rare Disease Foundation. I speak at, and attend conferences across Canada and the U.S. in order to try and raise awareness and create change. Those efforts are making a difference because here in Saskatchewan with the efforts of CRPS Awareness Day we have managed to see changes in the teaching curriculum for second year med students.
Trying to fit thirteen years into what I’m writing today isn’t easy because it would take a book to try and explain all the different ways that chronic illness affects an individual’s life. My story that I’ve outlined here for you today, really only touches the tip of the iceberg when it comes to what my family and I have had to endure. However, I’m choosing to see only positive and the things that bring me hope in my particular journey. Things like the levels of awareness that have been raised within my community and province. Or the personal friendships and support from different communities that I have gained along the way. I can’t say what will happen down the road but there are a lot of things that are in our control. What choices will you make?
My name is Ross McCreery and I am a patient/advocate fighting to raise awareness and create change for those of us who live with chronic pain. In 2006 I was diagnosed with the rare disease called CRPS(Complex Regional Pain Syndrome) that has no cure and very few treatments for the debilitating chronic pain of which I suffer. I am the founder of CRPS Awareness Day here in Saskatchewan which is an initiative designed to educate and raise awareness for the disease. I also sit on the board of directors for the Sask Pain Foundation in a client/advocate representative roll. Along with these endeavors I work with the Rare Disease Foundation and will be launching their first Adult Peer2Peer Resource Group.
“My goal as a patient/advocate is to help other patients, so that they won’t have to deal with the same physical and mental health issues that I have had to over the last twelve years”.
https://powerfulpatients.org/wp-content/uploads/ross.png600600Ross McCreeryhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngRoss McCreery2019-05-24 12:12:062019-09-02 12:28:50A Journey of Resilience
Every spring, we give our homes a deep cleaning to get it ready for the coming year. Do you do the same to your mind? Decluttering your brain is just as important as organizing your home. Here are 10 tips for mental health spring cleaning.
1. Start Journaling
Journaling might be a hobby that has fallen a bit out of vogue, but that doesn’t mean it’s any less effective. Keep a journal of your thoughts, worries, fears, and upsets. This helps release them from your mind.
2. Drop a Bad Habit
Pick an area in your life that has an impact on your mental health. For many of us, this might be diet or exercise. Make an effort to drop the habit and replace it with a healthier option. Instead of lazy Sundays, for example, maybe switch to lazy Sunday afternoons after a quick jog.
3. Let Go of Past Drama
Drama, and the negative feelings it induces, has a way of sticking with us. Let past drama go, even if it’s tempting to hang onto it. Your mind will be a more positive space and will be better able to handle the coming year thanks to your effort, and you’ll feel less stress and anxiety as a result.
4. Tackle Projects You’ve Been Putting Off
We all have a mental list of projects we really need to tackle. Start your “mental health spring cleaning” by writing down all of the things that you’ve been putting off, like home repairs or going to the skin doctor, and making the necessary appointments to get everything in hand.
5. Build Positive Relationships
We all have people in our lives that we love, but with whom we don’t have the healthiest or most enjoyable relationships. Instead of spending time prioritizing those people, consider dedicating your time to positive friendships instead.
6. Begin Healing Past Trauma
Life doesn’t leave anyone unscathed, and you might have some experiences in your past that have negatively affected you. If you haven’t already, now is the time to start taking steps towards overcoming them. Don’t be afraid to reach out to professionals for advice and guidance.
7. Make Gratitude a Priority
One great way to promote a healthy mind is to take some time to consider everything for which you are grateful. You can do this in a number of ways. If you’d like to make a daily list, for example, then set aside some time to the activity every day. You can also take a few moments every day and mentally check off all of your blessings.
8. Kick Negative Thoughts to the Curb
Chances are good you have enough on your mind without negative thoughts bouncing around. Consciously push those thoughts out and refocus on something positive instead.
9. Pick Up a New Hobby
Consider starting a new hobby to help spend your time constructively. A mind occupied with an interesting activity is a happy one.
10. Change Your Perspective
Accept that you’re not perfect and neither is the world around you. Instead of focusing on issues that make you made, look to the moments of progress and joy instead.
Are you ready to get started on your mental health spring cleaning? Take a look at some of our tips above and get started!
Amanda Turner is a recent graduate and freelance writer who is exploring her passions through writing.
https://powerfulpatients.org/wp-content/uploads/10-1.png600600Amanda Turnerhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngAmanda Turner2019-05-22 14:46:472022-11-08 13:58:0010 Tips for Mental Health Spring Cleaning
The 2019 Living Rare, Living Stronger NORD Patient and Family Forum is a conference in which patients and caregivers can gain insights and practical tools for living their best lives with rare diseases, with tracks for newly diagnosed patients, long-term patients, caregivers, physicians and medical students. Download the full agenda now for a look at the sessions, speakers, events and fun that will make this weekend in Houston one to remember.
In addition to workshops, programs include a Texas BBQ, wellness room with yoga and the hottest ticket in town: access to “NASA’s Museum” aka Space Center Houston, where we are hosting the year’s biggest show! Every registration comes with complimentary entry to the 2019 Rare Impact Awards, celebrating individuals, groups and companies making great strides to improve the lives of people living with rare diseases.
Monica Weldon is a caregiver for her young son, who is living with a rare disease. She will be speaking on “Relationships: Managing Marriage, Raising a Rare Child, Caring for the Other Children” as part of the Loving Rare track, which focuses on education and coping advice for caregivers. Here is an interview with Monica.
Please tell us about yourself and why you’ve founded the Bridge the Gap – SYNGAP – Education and Research Foundation?
When Beckett was 4 months old, I noticed he was not meeting the same milestones as his twin sister. This then began a journey to find answers to help my son. I started to blog about his progress and this led to building a community of parents and caregivers that are now a strong support group. I am the Founder and President/CEO of Bridge the Gap – SYNGAP Education and Research Foundation. My passion to help support these families by raising awareness and creating a strong foundation that will accelerate a path to better therapies.
I retired in 2016 after 23 years in education teaching secondary science. My new focus is on building the programs and mission of Bridge the Gap – SYNGAP Education and Research Foundation. I am the Primary Investigator on the SYNGAP1 (MRD5) Registry and Natural History Study. I am a life member of the Worldwide Association of Female Professionals and a member of the first class of 2017 Illumina Ambassadors established in the United States. In addition to leading the foundation, I am an author, public speaker, consultant on rare disease business strategies and advocates for rare disease legislation at both the federal and state levels. Several of my authored scientific publications include Nature Neuroscience, The Journal of Neurodevelopmental Disorders, and The Journal of Pediatrics. I have authored a book about my son Beckett’s diagnostic journey called “Slow Moving Stream – My Special Boy”. I graduated from East Texas Baptist University with a Bachelor’s of Science in Biology/Psychology (1991) and Secondary Certification in Education (1995). I am married to Chris Weldon and have five beautiful children, Haleigh (26), Taylor, USMC (23), Sawyer (21), and the twins Beckett & Pyper (10).
What specific challenges have you faced when advocating for your child? How did you overcome these?
One of the biggest problems I have faced is trying to obtain getting needed services for my son at the State level in public school and through Medicaid waiver programs. The education system is strained with lack of resources and under staffed to get the needed quantity of therapy that is required to keep him progressing at a constant rate. The state programs which allow him to have many of his medical needs taken care of are depleted due to lack of funding in our state. We have considered moving to another state to obtain the services that he so desperately needs. Respite care is essential.
What are some resources available to help families better manage their family relationships while being impacted by a rare disease?
If you are a person of faith, lean on your church. There are many special needs programs for couples and siblings of those with special needs. Find camps that will include both the child of special needs and typical siblings. If couples are having problems, seek counseling. If finances are problems, negotiate with the counseling group to see if there are sliding scales they use to charge either low rates or none at all. They all have them. Everything is negotiable.
What can parents do to feel less overwhelmed by a rare disease diagnosis?
I believe that grieving the loss of a child you thought you would have is a must. Counseling can help and also spending time away from the situation to work on the relationship can be beneficial. The question becomes how? Especially if you are financially strapped and may not have family or friends to help relieve and remove you form the stress of caring for a special needs child. Working out and taking time for yourself is incredibly important. People should not feel bad for taking an active role in self care. It is a MUST! if you don’t you lose yourself.
How can parents help their child living with a rare disease feel less isolated from the children who don’t have a rare disease?
I think that families should include them where ever possible and treat them as regular people. After all, they are. People seem to forget that just because they have a rare disease or disabled from one they do not feel, think or understand what is going on around them. They do and it’s just as important as if hey were not sick or disabled.
What are your tips for other parents who have children newly diagnosed with a rare disease?
Find a community like you! If you don’t have a community, then do not be scared to begin one. There are other people out there like you. Give them the opportunity to find YOU! This will make a world of difference in such a world already predisposed to isolation. Once you find a community, scour the world for experts.. if they’re none, find those who have related field in the symptoms of your disease. There will be someone eventually who will want to help. Never stop asking for help.
What do you wish everyone knew about families impacted by a rare disease?
It is HARD.. the days are Hard and long, but then days are triumphant and joyful. This life is easy to take for granted, but the circumstances also teach you not to sweat the small stuff. You really learn what is important in life. Choose your battles. Think about the things that are hard and say to yourself ” Do I want to die on this Hill today?” No! There are mountains and valleys.. keep going! This circumstance are meant to teach you something. Take those bad things and look for opportunities. Don’t feel like you have been trapped. Knowledge is power and actions make progress. Find leaders in the space making a difference and replicate them. Follow successful people, do what successful people do and you WILL be successful.
https://powerfulpatients.org/wp-content/uploads/Monica-Weldon.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-05-14 16:44:312022-11-08 13:50:04Spotlight On Monica Weldon – A Rare Disease Advocate
Last week, we hosted an Empowered #patientchat on leveraging social media for patient advocacy. The #patientchat community came together for an engaging discussion and shared their best advice and tips.
Top Tweets and Advice
Social Media Helps Your Connect with Others
Just Start
Think About When You Were Sick
Full Chat
https://powerfulpatients.org/wp-content/uploads/Leveraging-Social-Media-for-Patient-Advocacy-patientchat-Highlights.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-05-10 16:53:032021-07-10 20:02:58Leveraging Social Media for Patient Advocacy #patientchat Highlights
Anyone who has worked around cardiac patients have a humorous story to tell about their conversations with patients regarding sex. They usually sound something like;“Uh, my wife wanted me to ask you something.”
“What can I help you with?”
“Um, um, when can I resume, you know, normal activity?”
“What type of work do you do?”
“No, not that kind of activity, you know…the other kind.”
“I’m not sure what you are asking.”
“Um, you know, when can I start having sex again?”
It is a very common concern among people who have had heart attacks, open heart surgery, or even those who just had stents placed in their heart arteries. The short answer to the question is YES, THERE IS A SEX LIFE WITH HEART DISEASE. Most patients can resume normal sexual activity within a couple of weeks of their heart attack or stent placement. Those with open heart surgery may have to wait a bit longer because their surgical wounds need to heal.
There are some patients who may need to be evaluated prior to resuming sexual activity. Those who have congestive heart failure or certain rhythm disturbances should have a more in-depth evaluation before resuming normal sexual activity. Always keep in mind that just like other forms of exercises, like walking or climbing stairs, you should stop if:
You develop chest pain
You develop shortness of breath
You become dizzy
Certain medications may affect your body’s ability to have or maintain an erection; particularly beta blockers that are prescribed for most cardiac patients. Some patients react differently to these medications. A conversation with your physician may bring about a solution.
Do not use medications such as Viagra or Cialis if you have been prescribed nitrate medications like nitroglycerin for treatment of your heart disease. The combination of these medications may make your blood pressure drop to unhealthy levels.
Remember for most, sexual activity is safe and healthy following heart attack, open heart surgery or treatment for heart disease. Relax and enjoy your new lease on life.
https://powerfulpatients.org/wp-content/uploads/Is-There-Sex-After-a-Heart-Attack_.png600600PEN Editorial Staffhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngPEN Editorial Staff2019-05-09 15:21:162024-01-24 14:11:39Is There Sex After a Heart Attack?
Six years ago I went for my first mammogram. I was 40 and thought nothing more about it other than the obligatory 40 year marker of due diligence. In my mind, cancer didn’t run in my family, so this is just the beginning of my routine mammogram journey. Imagine the shock when I was called back for more imaging the next day and then told to take a seat in the waiting room for what seemed like forever. Shock turned to fear, as I sat listening to the radiologist tell me that I most likely had breast cancer and needed to see a surgeon right away.
The surgeon ordered a stereotactic biopsy which uses mammographic X-rays to locate and target the area of concern and to help guide the biopsy needle to a precise location. After the sample was collected, it was sent to a pathology lab to determine if there were cancer cells present. The 2 days of waiting for the results seemed like an eternity. The “what-if” was real. I had breast cancer.
Everything moved quickly from that point. Early detection was key to my plan that included a lumpectomy followed by 7 weeks of radiation. I opted for the earliest possible date for surgery and 2 weeks later it was done. Everything went by so fast that even to this day, I really don’t remember how I actually felt at the time because I was so focused on getting it done and moving forward.
Moving forward does include a new “what-if” that weighs on the minds of people in remission. What if my breast cancer returns? All the genetic testing I did showed little chance of recurrence, but still…what would I do this time?
What is My Plan if My Cancer Recurs?
I’ve done my share of diligent research on standard cancer care and cutting-edge cancer therapies. Much of the findings have me saying to myself “I wish I had known about this 6 years ago” and I talk with many other cancer patients saying this too. Through my discoveries, I took a profound interest in tumor storage. As a breast cancer survivor and patient advocate, my plan includes a more personalized approach to my cancer treatment.
First, I will store my cancer cells alive so that I can test various drugs on these cells and prioritize which ones (or combinations of) actually works (look up organoids), I can enroll in one of the cellular immunotherapy trials that activate the immune system to fight the cancer and minimize the chance of relapse (look up dendritic cell vaccines or T-cell therapy), and I can also genetically profile my tumor to identify targeted drugs and/or clinical trials to enroll in. I will have StoreMyTumor (www.storemytumor.com) handle the tumor preservation so that this will be an option for me tomorrow or in years to come. In my work, I see many advanced cancer patients have doors open for them that would not exist without their own preserved cancer cells available for testing different treatment options.
Personalized treatments start with the cancer cells, and I will lean on StoreMyTumor to be my resource for emerging personalized treatment options and trials all around the world. Every tumor is unique and contains information critical to treatment, but tumors are not preserved alive by hospitals and routinely discarded as medical waste.
Why are more patients requesting that their tumors be stored?
Cancer patients achieve a new level of control of their cancer management through their own Personalized Tumor Intelligence. I see this all the time as a Patient Support Coordinator interacting with cancer patients at all different stages. With the rapid pace of emerging new therapies, there is no reason to settle for the standard of care when there are better and more personalized options available. You just need to find them and be your own advocate to save your life.
Stacey Nardo is a breast cancer survivor who works as a Cancer Patient Support Coordinator at StoreMyTumor. She is passionate about working with cancer patients navigating their treatment journey because she’s been in their shoes and understands what they are going through. An advocate for emerging cancer therapies, Stacey empowers patients to discover treatment options beyond the standard of care, explore all options and to never stop fighting.
https://powerfulpatients.org/wp-content/uploads/Stacey.png600600Stacey Nardohttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngStacey Nardo2019-05-08 16:22:582021-07-10 20:06:02Living in Fear … Here is my Plan Should My Cancer Recur
