Empowering Patients to Become Effective Self-Advocates, by Joanne Buzaglo, Ph.D.

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When it comes to self-advocacy, we talk a good game. We tell patients to ask questions, to seek clarification when they don’t understand the answers and to make sure their values and goals are part of the discussion. We urge people facing cancer to take an active, educated role in their treatment decision-making, to seek second opinions. When communications between doctors and patients break down, we encourage patients to find new care providers.

It’s easier said than done.

For a significant percentage of people facing cancer, or any serious disease, becoming an effective self-advocate poses a range of challenges. Becoming a cancer patient means entering a new world, one in which patients and their caregivers confront an increasingly complex array of treatment options. At a time when individuals are dealing with fear, uncertainty and disruptions in every key aspect of their lives, we expect them to educate themselves and make informed decisions about issues with which they have little or no experience. In many instances, this also means shifting the paradigm of doctor-patient communications from the more traditional one-way physician-tells-patient-what-to-do to a two-way, interactive discussion between equals.

My own situation is one example of how difficult this process can be—even for someone who has spent her life in the oncology world researching patient behavior and advocating for more effective doctor-patient communications. After my second cancer diagnosis, breast cancer, I underwent a course of chemotherapy that resulted in numbness and tingling in my feet, known as neuropathy. I have an excellent doctor, but it was not until I had fallen several times that I asked for a referral to a physical therapist, and I actually felt guilty about “bothering” my very busy physician with an issue that was seriously compromising my life. And then, it took some time until I scheduled the appointment. Somehow the fact that I asked for the referral meant that it must not have been a priority. The upside of my advocating for myself is that I truly benefited from getting the physical therapy that I needed, and I haven’t fallen since.

We hear about these issues all the time, both in the data we collect through our Cancer Experience Registry and the personal accounts of the patients and caregivers who participate in Cancer Support Community programs. On the anecdotal level, I think about a young African-American woman from Texas who sobbed as she described her frustration with her doctor’s unwillingness to answer her questions about her cancer. She had tried writing her questions down, bringing someone with her to her appointments, reading about her condition, but her efforts to communicate were brushed off. She couldn’t even get an answer as to the stage of her cancer. The result was frustration, fear and high levels of anxiety about her future. For this woman, effective self-advocacy meant changing doctors, but she was afraid to make that move, to leave her small town for a treatment center in a more distant city.

Alexander Raths/Shutterstock

Our data bear out these concerns. While most patients report receiving information about their treatment options, less than half report being knowledgeable about their treatment options, and a significant proportion reported not having enough knowledge or support to fully engage in treatment decisions.  Over half felt significantly unprepared to discuss treatment options with their doctor. We have also learned that it is not uncommon for patients not to report all of their symptoms and side-effects from treatment to the healthcare team. Among survivors of multiple myeloma, a rare blood cancer, over one-third (36%) did not report all symptoms and adverse effects to their doctors or nurses. The most common reason was, “I don’t think anything can be done about these problems.”

The bottom line is that it is not enough just to tell patients and caregivers that they need to be self-advocates. To empower patients, we need to provide individuals facing serious diseases with the resources and the skills to make this possible. That means ensuring that patients have accurate information that they are able to understand and use, assisting them in developing appropriate questions, making it easy to access their medical records, and opening the doors to thinking about what is important to them at various decision points during the course of treatment.

Patients can learn skills to help them communicate better, use their time and that of their doctors’ wisely, know when to ask for additional help. One doctor with whom I have worked suggests that patients who have complicated issues to discuss notify the office in advance so that the extra time can be made available. Patients also benefit from taking advantage of the patient-centered care that nurses, nurse practitioners, social workers and patient navigators offer. When, for whatever reason, the relationship isn’t working, patients need the skills and confidence to make changes.

In addition to discovering or acquiring the skills needed to become effective self-advocates, people facing cancer also need to be empowered to believe that their voices can and should be heard. Older people, those who are less educated or come from lower socioeconomic groups—those who are timid by nature—may find it difficult to question someone they perceive as authority figures who control their destiny. They may fear asking “dumb” questions or alienating their doctors by questioning them. And, trust is critical to any good doctor-patient relationship. Patients want to believe in their doctors. The goal must be to create a safe, secure and nurturing environment which encourages every patient and caregiver to trust not only their treatment teams but also to ask for what they need.

Joanne Buzaglo, Ph.D.
Senior Vice President of Research & Training
Cancer Support Community

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When it comes to self-advocacy, we talk a good game. We tell patients to ask questions, to seek clarification when they don’t understand the answers and to make sure their values and goals are part of the discussion. We urge people facing cancer to take an active, educated role in their treatment decision-making, to seek second… Read more.

Maintain Your Oral Health to Keep Your Body Healthy, by Dr. Michael Firouzian

We had a great personal friend that we could never educate enough to come in for routine dental care. He would only address and visit when a tooth would break. His justification was that he always flossed and brushed his teeth every day and was meticulous.

Over ten years ago, he passed away of pancreatic cancer. Although within his immediate family he had access to the head of pathology and children who were physicians, at that point no one could really heal him. It may be just a coincidence, but we know of the link between oral bacteria and pancreatic cancer. It reminds us that it’s important to do what we can, when we can, to care for our bodies and our patients. And that we can’t always do everything for ourselves, but should accept the help of others while we can.

Your Mouth Is Constantly Exposed to Toxins

Virtually everything that enters your body passes through your mouth. Even your breath passes through the rear of your mouth. That’s why your mouth is designed like the entrance to a fortress, with numerous baffles and traps to keep unwanted bacteria and toxins from penetrating further into the body.

The mouth is designed to collect and trap bacteria, especially in places like the tonsils. The numerous crypts are designed for holding and killing bacteria. Sometimes this can backfire, as when tonsil stones accumulate and acquire a foul odor — bad breath.

Oral health can impact your overall health

Or when oral bacteria can begin to congregate and thrive around the teeth. Periodontal disease, also known as gum disease, is the greatest threat to your teeth, and your health.

Tartar is another instance of the body’s own defenses backfiring. Tartar — also called dental calculus — is the hardened deposits that develop around the base of your teeth in places where you have difficulty cleaning. These deposits are basically fossilized plaque.

Our saliva contains minerals that help remineralize our teeth, but these minerals can also be absorbed by plaque, turning the soft smudge into a hard crust that you can’t remove with your toothbrush.

This crust shelters oral bacteria, allowing them to thrive. Under the shelter of tartar, oral bacteria can thrive, creating a new home between your gums and teeth, constantly expanding the space. Tooth grow loose as the infection penetrates deep into the bone.

Your Body on Alert

In response to this deep infection, the body executes its “nuclear option,” calling out destructive immune cells that destroy bone as well as bacteria in an effort to try to stop the infection. This is the third instance of the body’s own defense mechanisms backfiring, because it’s as much our immune response as bacteria that lead to tooth loss.

And while the immune response is on high alert in the mouth, the inflammatory signals are traveling through the body. Every place in the body is on orange alert, then red, and under the strain, the body reacts in unpredictable ways. Diabetes has been linked to chronic inflammation. As has cancer. And sometimes the immune system cracks under the strain, attacking the body as well as bacteria in autoimmune disorders like rheumatoid arthritis.

This is all because our bodies can’t really handle this type of chronic infection.

Let Us Help

The backfiring and malfunctioning immune responses are the product of a body that is constantly taxed from immune system stress, although you may never know it. All you see is red, inflamed gums, and maybe a little blood when you brush. Until your teeth become loose, and that’s when there’s a serious problem.

Do what you can to protect your teeth. Brush. Floss. Watch what you eat. But let us do what you can’t: remove the tartar from your teeth, assess the level of infection, and give you a treatment like Perio Protect that can target oral bacteria and let your immune system stand down from high alert. That way everyone can rest, and the body can see lower risk of heart problems, cancer, diabetes, autoimmune disorders, and more.

To learn more about the benefits of regular dental care, please call (614) 825-3343 today for an appointment with Columbus dentist, Dr. Mike Firouzian at the Center for Family & Cosmetic Dentistry.

Written by: Michael Firouzian, D.D.S., F.A.G.D.

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We had a great personal friend that we could never educate enough to come in for routine dental care. He would only address and visit when a tooth would break. His justification was that he always flossed and brushed his teeth every day and was meticulous. Over ten years ago, he passed away of pancreatic cancer. Although… Read more.

How to Let Stress Empower You, by Rob Rutledge, MD, Oncologist

As part of an experiment, you are asked to give an impromptu five-minute speech about your personal weaknesses.  You stand in front of a video camera and bright lights – two ‘observers’ who have been instructed to snicker, shake their heads disapprovingly, and whisper to one another throughout your presentation. At the conclusion of your humiliating speech, you are asked to do a math test. “Start with 996 and subtract 7, say the answer, subtract 7 again, and keep going – as fast as possible.”  Regardless of how well you do, the observers prod you to go faster, chirp in comments like “you’re not very good at math, are you?”, and generally mock your efforts.

You’ve just suffered through the “social stress test”, a standardized procedure scientists use to provoke a stress reaction.  Typically, you would break out into a sweat, feel your heart pounding in your chest, and feel shaky, agitated or flustered – in exactly the same way you typically do when you’re feeling stressed.

Through this type of experiment psychologists are proving that our attitude and beliefs about stress actually influence our body’s reaction and how we can perform in stressful situations.  In a Harvard University trial half the participants about to undergo the ‘social stress test’ were told that stress energizes the body and mind for action (Jamieson et al, 2011). The pounding heart would be interpreted as your preparing yourself to take action. The heavy breathing helps deliver oxygen to your brain, making you think more clearly.  The meta-message given to soon-to-be participants is stress helps you rise to any challenge. Compared with the control group (who gave the same humiliating speech and math test without seeing the positive reframing video) the participants who were taught to view their stress reaction as helpful actually felt much better. They experienced less stress and anxiety, and felt more confident in their efforts. Furthermore, the scientists could detect important differences in the constriction of their heart blood vessels. Typically the stress reaction causes the coronary vessels to constrict, a condition which predisposes the person to having an immediate heart attack. People who can reframe the symptoms of a stress reaction as helpful actually open up their coronary blood supply, a state also achieved when people feel joy and courage.

This burgeoning scientific evidence also shows that how we perceive a stressful situation will actually change our performance. Another experiment was conducted on MBA business students going into a mock job interview for the job of their dreams (Abelson et al, 2014). All participants were told that it’s normal to feel stressed just prior to the interview. One group was told use the stress reaction as a cue to focus on how they were going to impress the interviewers by proving they were the best person for the job. The second group was asked to reflect on how the job was connected to their values. They were told to think about how getting this job would give them an opportunity to express their deepest values in the world. The videotapes of the interviews were shown to unbiased raters who didn’t know what each interviewee was told beforehand.  Compared with the “prove you’re the best” group the MBA students who were told to put their anxiety into the context of meaning were rated as being more inspiring and uplifting, and judged to be better potential colleagues, and so more likely to be hired.  In addition to the interview ratings, cortisol levels were measured on all participants at the end of each interview. Cortisol is one of the stress hormones that causes the blood sugars and fats to increase, decreases our ability to learn and remember, and generally causes inflammation and breakdown of the healthy tissue.  Remarkably both experimental groups felt stress as they went through the interviews, but those that thought about meaning in the context of stress had much lower blood cortisol levels.

Living life after hearing the words ‘you have cancer’ can lead to many stressful situations like going in for a medical appointment. You can acknowledge that feeling stressed is natural, it’s part of being human. Your Cancer Support Community has programs (Qigong, Yoga Mudra, Yoga Nidra, Mindfulness Meditation) that will teach you how to recognize your own unique stress reaction, and then settle down your body’s reaction as best you can. From this more relaxed state it’s easier to act in a wise and compassionate way. And when you reframe that the stress system is your body’s natural way of giving you energy to rise to the challenge, and when you can remember you can bring your highest values like wisdom and love right into your day to day actions we will be lighting the way for yourself and others.

Rob Rutledge, MD, Oncologist
Associate Professor of Medicine
Dalhousie University, Halifax, Canada
Chair and CEO of www.HealingandCancer.org

 

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As part of an experiment, you are asked to give an impromptu five-minute speech about your personal weaknesses.  You stand in front of a video camera and bright lights – two ‘observers’ who have been instructed to snicker, shake their heads disapprovingly, and whisper to one another throughout your presentation. At the conclusion of your… Read more.

All of Us, by Tom Thon

I have been a resident of Columbus for over 35 years. My business career has been in media, primarily managing radio stations. As radio stations are licensed by the federal government, licensees are required to “give back” to their respective communities–usually by PSA’s and other related public affairs programming. So I experienced the requirement of giving back as part of my job. But more importantly, I soon realized it was the right thing to do. And I also recognized that it was relatively easy to exceed the minimum expectations of a station licensee. So exceed we did. And my recognition of “doing the right thing” is what brought me to the Cancer Support Community (CSC).

I was introduced to the CSC in 2014 via a media job in the outdoor/billboard industry. Clear Channel Outdoor was actively engaged w CSC on an in-kind marketing donation/PSA basis. The more I got to know CSC leadership and WHAT IT DID, the more I grew to appreciate and recognize the mission. And I quickly accepted the opportunity to become a Board Member when offered.

Cancer sucks. We all know it. And we ALL have been affected by the “C”. ALL OF US. Fortunately for me and my family, its direct impact on us has been relatively small. Of course losing a family member at any time to any disease is no small thing, but my “direct impact” was losing my fiancée’s father to lung cancer many, many years ago. Perhaps the length of time that has passed since his passing makes the direct impact seem less direct.

Unfortunately since “Mr. O’s” passing 35+ years ago, the list of our friends affected by cancer has grown. Just like ALL OF US. Breast cancer, multiple times. Lung cancer (I left Kobacker House less than an hour before a friend passed). Melanoma, multiple times. Prostate, multiple times. Compiling this list is difficult. Makes me appreciate how fortunate my family is. And it makes me appreciate the value of Cancer Support Community.

Think about what we do: “So that no one faces cancer alone”. We are dedicated to providing wellness alternatives, support and opportunities for cancer survivors and their families at no charge. Zero. Zilch. All provided by a staff that cares more than probably I can fully appreciate. ALL OF US care–but the Cancer Support Community staff – THAT’S CARING! Our staff cares for a living!

In closing, I reflect back on a father and son who came to a Board meeting to share their cancer story. How it had and has affected them. And how the Cancer Support Community had affected them. We provided them a home of sorts…a home of comfort and caring. A home of refuge from this damned disease. A home for nutrition. Yoga. Tai Chi. Networking and Support groups. Meditation. All in a beautiful facility that feels like a home…away from cancer. And without the worry of an associated expense. Zero. Zilch.

Spread the word about the Cancer Support Community. ALL OF US need it.

Tom Thon

Written by: Tom Thon, Cancer Support Community Central Ohio Board of Directors Member

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I have been a resident of Columbus for over 35 years. My business career has been in media, primarily managing radio stations. As radio stations are licensed by the federal government, licensees are required to “give back” to their respective communities–usually by PSA’s and other related public affairs programming. So I experienced the requirement of… Read more.

My Cancer Journey: Scotch, Wigs and Board Service, by Susan Haller

I first discovered my own “breast cancer suspicion” stepping out of a shower in Stamford, Connecticut, in the spring of 1995. After noticing some shape anomalies, I muttered a few unpleasant observances and continued with my day. I had just extended a business trip to spend a few days with my mom, who was on the downhill slide with lung cancer.

I made an appointment to be checked upon returning to Columbus. I had my checkup and called in for my results a few days later while at Chicago’s Midway International Airport. I heard the word “malignancy” and went right straight to the closest Midway bar. My compadres wondered why I switched to Scotch from my usual chardonnay, but I didn’t really want to talk about it. I located a seat away from my traveling companions and started to thoroughly study the booklets and pamphlets on breast cancer by myself.

Following my diagnosis and meeting with a surgeon, I had the choice of going on a preplanned family vacation before or after the surgery. I decided to wait and recoup on the beaches of North Carolina. I was more tired than usual, but was spoiled by family and friends.

With the excellent support of family and friends, I made it through chemo as well as a clinical trial that consisted of heavier doses of chemo in a shorter period of time.  Doses of Tamoxifen followed. I was pleased to find that a few years after completing my clinical trial, it became protocol.

I felt very fortunate that I didn’t receive a terminal diagnosis. My son, Andrew — 14 at the time – asked if I was going to die. I said, “Some time, but not yet.”

Losing my hair was a challenge. Initially, I thought I’d be in a business meeting, have a huge sneeze, and go completely bald. I got by with hats and scarves loaned by many friends. After buying a wig, I only wore it once, however; it did get used a second time when my son dressed as me for Halloween!

I was feeling home-free from cancer when I passed my fifteen year anniversary in 2010, but was diagnosed a second time after year sixteen. This time, it was a different type of breast cancer in the opposite breast.  Fortunately, a lumpectomy and about half the usual dosage of radiation was my treatment. Again, I felt so fortunate.

I have to say that one thing that has made me feel fortunate and stay positive is the incredible support I have received from work friends, personal friends, and my family— especially my spouse.

When Cancer Support Community Central Ohio, called The Wellness Community at the time, became in independent entity, Harry Davidow from the Cincinnati affiliate’s board of directors asked me to join the board of directors here in Columbus. Without hesitation, I accepted his offer and have been part of the organization ever since.

Being on the board for so many years makes me feel grateful for the growth— the contributions of a great team, board of directors and staff – and so very proud of all of the new accomplishments in the past few years.  We’ve come such a long way from several years ago when we did not know where the next month’s rent or salaries were coming from.

I continue to stay on board so I can do my part in supporting the organization to help the participants on their cancer journeys.  Hearing participants share their stories is such a rewarding and humbling experience.  As a researcher, I read the responses of the surveys that participants take and find happiness in knowing that Cancer Support Community has helped, or in some cases, has saved them in some way.  They say there is no other place that offers what Cancer Support Community does, and I am glad to be part of something so unique.

In continuing on the board, I look forward to being a part of the team that is working on awareness research and getting the word out to those who need Cancer Support Community’s services.

Susan Haller

My Cancer Journey: Scotch, Wigs and Board Service, written by Susan Haller

 

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I first discovered my own “breast cancer suspicion” stepping out of a shower in Stamford, Connecticut, in the spring of 1995. After noticing some shape anomalies, I muttered a few unpleasant observances and continued with my day. I had just extended a business trip to spend a few days with my mom, who was on… Read more.