THE NEWLY DIAGNOSED CANCER PATIENT

After surviving the initial shock of a cancer diagnosis, additional challenges are inevitable.  Potential sources of fear and anxiety include understanding the treatments recommended for you, potentially unpleasant side effects, lifestyle changes, financial worries, body-image issues, and concerns about how your diagnosis will affect your job, family members, and other interpersonal relationships.  After 27 years as an oncology nurse, I can attest to what research has proven:  One of the most important resources a cancer patient can have is a solid system of support.

Submitted by Sue Ellen Glover, RN, OCN, a Beacon Oncology Nurse Advocate, November 12, 2013

Fear of the unknown is one of the most common sources of distress I have encountered with new cancer patients in my many years as an oncology nurse. The good news is that most people find that neither the treatments nor the side effects are quite as bad as they imagined.  That doesn't change the fact that getting through that first day in a chemo chair or on a radiation treatment table frightens almost everyone! I haven’t seen many people run from the infusion center or jump off the table, so chances are good that you’re going to make it through that first day and actually feel some relief once it’s over.  But what happens next?  How do you get through the weeks or months of treatment and somehow keep your life together? Here are a few tips I've collected to help you do just that.

Become your own advocate.  Clear and honest communication with your oncologist and your oncology nurse can help to ease some of this fear. Additionally, your oncology nurse can assist you in answering questions or helping you to find appropriate resources. Oncology nurses have the experience, information, and knowledge to help you make informed decisions about your cancer care.  It has always been my belief that knowledge equals power.  Though you will be faced with making difficult decisions throughout your journey, educated decisions almost always result in better outcomes.  Understanding your treatment and options helps you to feel empowered. Look for a doctor who willingly listens and provides answers to the questions burning in your mind.  This creates an atmosphere of mutual respect that facilitates a more trusting relationship between you and your oncology team.  Taking a stance to be involved in your care is the first step in taking back some of the control that you need to move forward with a decisive, positive outlook.

Engage your personal support system.  In my experience, cancer patients with a strong support system consistently have better outcomes emotionally, physically, and according to research, a strong support may even play a role in overall survival.  Sources of support and comfort may include: family, close friends, spiritual practices, attending support groups, and meeting with healthcare practitioners specifically trained to understand the unique needs of a cancer patient. The key to good psycho-social support is having others available with whom you can have meaningful discussions to help you work through your issues and feel safe venting negative feelings.  You are likely to cope better with people around who can help encourage you to take good care of yourself and to do things for you when you’re not up to it.

Let others help.  Making it a priority to keep your life ‘normal’ through treatment and recovery may help in dealing with the distress of your new diagnosis.  Most strategies include activities that assist you in retaining control of your own life.  Taking your children to school, having lunch with friends, participating in an activity you enjoy, are just a few examples of how to stay connected to your life before cancer. Studies have shown that withdrawing from normal activities may lead to depression, anxiety, and an inability to cope with the abrupt changes that can occur after a cancer diagnosis. Even so, there are likely to be times when you’re not up for a social outing or even making a meal for yourself or your family.  People want to help, but often don’t know how. This is the time to allow friends, family, people from your church or community to bring you dinner and a movie, mow the lawn, or take your kids for a few hours or overnight. 

Don’t try to go it alone.  There is no “one size fits all” when it comes to the emotional, psycho-social, or other needs of a newly-diagnosed cancer patient. Despite having people around who care, some people find that the emotional burden of coping with a cancer diagnosis leaves them feeling isolated and alone.  Social isolation is a common reaction when a person is faced with a life-threatening illness.  If you can’t talk to those closest to you, consider a support group.  Talk with your oncologist, your oncology nurse, or check area hospitals for information about local groups available close to home.  Alternatively, the American Cancer Society (ACS) is just one of many national cancer organizations that offer a wide variety of programs to meet your individual needs.

The following is a sampling of programs provided through the ACS. Contact your local chapter for dates, times, and availability:   

·       Online Communities and Support- these programs provide a way of connecting with others who share your experiences without leaving the comfort of your home and include:  WhatNext (cancer support network), Circle Of Sharing™ (personalized cancer information), and Cancer Survivors Network. 

·       Road to Recovery (Rides to treatment)

·       Hope Lodge (Lodging)- provides lodging when getting the best treatment means traveling far from home

·       Reach To Recovery (Breast cancer support)- matches breast cancer patients with volunteers who have “been there”

·       I Can Cope (Online cancer education classes)- helps cancer patients and their loved ones learn about cancer

·       Look Good Feel Better (Help with appearance-related side effects of treatment)- In a Look Good Feel Better session, trained volunteer cosmetologists teach women how to cope with skin changes and hair loss using cosmetics and skin care products donated by the cosmetic industry.

 Source: http://www.cancer.org/treatment/supportprogramsservices/index 

Beacon Oncology Nurse Advocates promote and support caring for the whole person, by encouraging self-advocacy through education and participation in decision-making that includes family, friends, and other caregivers as directed by the patient; utilizing cultural and spiritual sources of comfort; engaging in activities that bring pleasure and have roots in the patient’s life before cancer; joining support groups that encourage verbalization of feelings in a safe environment where others have a real understanding of what the patient is experiencing.

Consider a Beacon Oncology Nurse Advocate if:

·       You do not feel you fully understand your cancer, treatment, or available options

·       You have concerns about making decisions regarding your treatment on your own

·       You need help understanding your health insurance benefits or are struggling with getting authorizations for doctors, treatment and/or medications

·       You feel overwhelmed by the complexity of your treatment plan and need assistance coordinating your care 

·       You want a licensed, experienced, certified oncology nurse to participate in some or all of your care to help you make informed decisions

We encourage you to send your comments, questions, or to share your experiences with us.

PATIENT ADVOCACY: WHY, WHAT, WHO and HOW?

Patient advocates can be friends or family members, or hired professionals. Among hired professionals, you will find some advocates with medical backgrounds, some without; some with specific oncology experience and some with experience in other fields of medicine; also, some will work for the medical institution providing your care, and others work independently, representing only you.

Why do you or your loved one need a patient advocate?

Cancer care/ chronic illness is complicated diagnoses. Combine this illness with a complicated and fragmented medical/healthcare system and situations can get out of hand. You need the ability to think clearly to ensure that you are making the right decisions for you or your loved one. You might find yourself unable to attend doctor’s appointments or be at the hospital just at the right time that the physician enters the room. These are the times when it is helpful to have an objective person to be present.

What does a patient advocate do?

They make sure the patient is being treated well. They act as a sounding board for you to discuss your healthcare issues. They prioritize and focus on what is important for the patient and caregiver. They attend doctor appointments (or whenever there is a conversation regarding your healthcare). They disseminate the information and put the conversation in non-medical terms. They pay attention to the details. They try to ensure that medical errors are not made and facilitate further understanding of the information communicated to the patient and caregivers to prevent confusion.

     

    Who can be a patient advocate?

A hired advocate is one who has chosen to make a career and commitment to helping patients have a voice and improve the quality of care they receive; choosing a hired advocate involves developing a trusting relationship. A non-hired advocate is a loved one, family member, or friend/neighbor whom you trust and has your best interests in mind

How to choose a patient advocate:

Decide which areas of help you are looking, for example, is it insurance, treatment questions, case management/organization of treatments, specific understanding of information about your cancer/illness, or an emotional sounding board.

Check your advocate's experience, qualifications, and references:

Advocates with medical experience should be qualified registered nurses. Ask for detailed information about an advocate’s experience. Ask for client references and medical professional references. Is your potential to advocate someone you feel is trustworthy? Do you feel comfortable sharing your private medical information with this person? Is your potential advocate compassionate, and above all, a good listener.

Why a cancer (oncology) nurse advocate?

Cancer nurses are knowledgeable about the delivery of health care services involving cancer issues. They understand the complexity of patient care and the importance of taking care of the whole patient. They have the experience and the ability to anticipate issues related to cancer treatment.

Additionally, your personal cancer nurse advocate can help you:

They navigate the complexities of cancer care within the healthcare maze. They help you to understand your insurance benefits and explore testing and/or treatment options. They can compare your planned treatment to evidence-based clinical guidelines such as those of NCCN. They develop a list of questions to discuss with your medical team; research clinical treatment and clinical trial options if requested; and guide you through changes in medical direction and/or treatment. 

Differences between an oncology nurse navigator and a private oncology nurse advocate:

An oncology nurse navigator typically works within and for a medical center. They act as a liaison between you and your doctors at their facility. They educate, advocate, coordinates care and assists navigation of the healthcare system. They are there to improve your cancer care experience.

A private oncology nurse advocate has the same level of experience and qualifications, but s/he works for you, and is not beholden to an institution.

Beacon Oncology Nurse Advocates is a private oncology service located in St. Petersburg/Tampa Bay area Florida. They also help patients/ caregivers located elsewhere in the state.

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Top 10 Tips for Getting Well and Staying Healthy

In an effort to understand  available resources for our clients who are interested in more naturalistic/holistic and integrative therapies, I attended an amazing conference last week coordinated by the Annie Appleseed Project. While there I met many folks of various beliefs and approaches to cancer prevention and healing. One of the many amazing individuals I met wrote a book that has become a best seller   A Lighter Side to Cancer – From Wake-up Call to Radiant Wellness written to inspire individuals to participate in their own healing from cancer or any degenerative disease. I wanted to share her top 10 tips with you all.. Thank you, Sandy.   

TOP TEN TIPS FOR GETTING WELL
AND STAYING HEALTHY

1. Be aware of your options.

Amazing people, products, procedures, and experiences are within your reach. Be curious about who and what is available to help you create a healthy lifestyle. Be a mindful detective and discover the best resources for your health and well-being. Take the time to ask for help, attend workshops, take classes, read, and explore the Internet.

2. Create a wellness "dream team."

Choose traditional and complementary healthcare providers that support and nourish you--body, mind, and soul. Maintain a healthy body with the assistance of medical doctors, a mercury-free dentist, chiropractor, herbalist, acupuncturist, massage practitioner, etc. Create a more positive perspective with the support of outstanding self-help authors, a motivational guru, psychotherapist, life coach, etc. Enhance your spirituality and creativity with inspiring instructors of yoga, meditation, art, music, etc.

3. Build up your resistance to stress.

Find the stress-reducing strategies that work best for you and use them regularly, e.g., simplify, change your perception, sleep, exercise, relax, speak up, get a massage. In addition, make conscious choices about whether to accept, change, or avoid stressful relationships and situations.

4. Follow a nutrition plan that fuels your body.

Quality food, water, and supplements contribute to boosting your immune system and detoxifying the cells of the body. Eat the foods that support your digestion and energize your body. Drink enough water to hydrate the body and flush out toxins. With care and guidance take supplements and herbs to fortify your physiology as well as increase energy and mental clarity.

5. Rejuvenate your body with exercise.

Design an exercise program that is right for your body. Remember to have fun and reevaluate if you do not feel great!

Aerobic exercise strengthens the immune system, tones the nervous system, benefits the cardiovascular system, and detoxifies the body--running, cycling, swimming, dancing, jumping rope.

Stretching elongates muscles and loosens joints, tendons, and ligaments. Yoga improves breathing and flexibility, focuses the mind, and induces relaxation.

Weight-bearing exercise strengthens bones, elevates metabolism, and tones and builds up muscles--weightlifting, dancing, and rebounding.

6. Reduce toxicity--body, mind, and soul.

Be aware of what is compromising your health and well-being. Caffeine, nicotine, alcohol, sugar and artificial sweeteners are detrimental to your body. Critical, negative thoughts create inner turmoil and distort your perceptions of yourself and reality. Fear and hatred are obstacles to experiencing the love, serenity, and creative forces within your soul. Take charge of what is within your power to change.

7. Develop an uplifting spiritual practice.

Maintain a positive connection to yourself, life, and a Higher Power. Acquire beliefs that give you inner peace, an optimistic outlook, and an attitude of gratitude. Seek experiences that inspire you. Prayer, meditation, yoga, music, drumming, art, nature, and other trance inducing modalities remind us we are part of a greater reality.

8. Cultivate nurturing relationships.

Limit your contact with people who cause you stress; allow friends and community support—religious, self-help, volunteer--to give you pleasure. Connect with people who acknowledge you and your values. Reach out to people with whom communication is constructive. Ask someone to listen to your struggles and encourage your desires; do the same for them.

9. Turn having fun into a habit.

Do something that puts a smile on your face every day: Read the comics, watch a funny movie, play with a child or pet, laugh at the absurdities within your life, talk with a friend, go on a picnic, etc. Be creative as you include more adventure and fun in your life. Allow humor and laughter to lift your mood.

10. Create supportive environments.

Notice if you feel energized or drained by your physical environments and/or the people with whom you share them—home, work, and community. Change these surroundings to reflect what is important to you. Start over if necessary. Find or create your niche; feel more ALIVE.

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SMART goals are:

Specific - Precise description (How will you breakdown a global issue?)
Measurable - Number or quality (How will you know you have it?)
Attainable - Action oriented (What actions will lead to success?)
Realistic - Lifeline to reality (Are your personal resources and support networks sufficient?)
Time-oriented - Designated Time (How will you make yourself accountable in time?)

Sandra Miniere, M.Ed., is an Amazon Bestselling Author, transformational life coach and EFT practitioner. She specializes in wellness and personal transformation. She helps people make lifestyle changes to live well longer. She can be reached at Sandra@IntegrativeWellnessExpert.com or 813-994-2297. www.integrativewellnessexpert.com

For the Newly Diagnosed

 Receiving a diagnosis of cancer is a life changing event setting you on an unexpected journey. As you begin your journey, consider the following proactive actions to help set you up for success:

• Take several deep breaths and try not to panic. Many cancers are treatable, so try and stay positive until you know all you can about your diagnosis
• Utilize relaxation techniques that have worked for you in the past, or try new techniques
• Consider avoiding researching on the internet UNTIL you have spoken with the specialist (and received confirmation of the cancer diagnosis and staging information). It is important to note that each cancer, each person is unique and timing of diagnosis/stage is important
• As you move beyond the initial shock to begin your journey of surviving your cancer, you must make a commitment to yourself that you will be in control of your fight with cancer
• Bring an advocate with you (family, friend, or paid advocate) during the planning sessions with your physician(s) to take notes
• Understand your insurance benefit design (what is and not covered) to help you make decisions - in addition, ask to be assigned a case manager
• Consider seeking a second (or third) opinion so you fully understand your treatment options
• Organize your thoughts and be prepared for your doctor's appointments and bring a list of questions with you to your physician visits
• Do not begin a treatment regimen without fully understanding its the benefits and risks
• Ask for copies of all of your diagnostic tests (including all x-rays, scans, pathology reports, lab tests) as you begin to organize your treatment organizer/file
• Make sure you have a good working relationship with your medical team: Are you receiving the answers to your questions? Does your physician understand your cultural values, wishes and needs/wants? Do you feel heard?

 Consider hiring Beacon Oncology Nurse Advocates if you are experiencing any of the following:

• Has your cancer diagnosis left you feeling fearful, worried and unsure?
• Do you feel lost in the complexities of the healthcare maze?
• Do you need help making sense of the many available treatments and alternative approaches?
• Are you feeling anxious trying to process complex medical terms and large amounts of information provided by your medical provider?
• Could you use assistance preparing for your physician visits, thinking through questions that are important to you?
• Do you want a peace of mind knowing that you have been empowered to make informed decisions regarding your cancer care?

 

We at Beacon Oncology Nurse Advocates can help you navigate and take control of your journey, so that you can chart a confident course to the best cancer care for you!

http://www.BeaconAdvocates.com

 

The article below discusses the emerging trend of private patient advocates within the Australian health care system and the discussion among their physicians medical association...

 

As the use of private patient advocacy services continues to grow beyond our US (healthcare) borders, it appears that a single-payer system/open access is not the only solution towards guaranteeing high quality health care. I believe that there are pearls of wisdom to be learned from examining the causal factors driving the emerging trend of private health care advocacy - patients are individuals who want individualized care, who are beginning to demand it, and who are willing to pay for it. Once these key issues are evaluated, perhaps then systemic solutions can be developed that includes a health care model that welcomes a more empowered-educated consumer to yield higher quality of care with better health outcomes.

 

Doctors lament rise of private patient advocates

JULIA MEDEW December 30, 2012

How you can help yourself ... ask a family member or friend to attend appointments and support you during a hospital stay.

PRIVATE patient advocates are charging hundreds of dollars to sit in on medical appointments to ensure patients understand what they are hearing and ask the right questions.
They are also helping people gather second and third opinions on diagnoses and treatments, and mediate disputes when patients have concerns about their care.
Doctors, however, are concerned about the trend and the president of the Australian Medical Association, Steve Hambleton, said the answer to better care was more resources, not private advocates.
Private patient advocacy is already big business in the US and Britain, and is starting to emerge in Australia. A new Victorian company called Patient Advocate is offering what is believed to be the first fee-for-service model in which people can employ an advocate to step in and resolve an immediate concern in the health system at any time of day. It is soon to expand to NSW and Queensland.
The business, created by lawyer Claire Crocker last year, has assisted nearly 100 patients and has provided some with a ''by your side'' service, in which an advocate shadows the patient at particular times to ensure they have an ''extra set of eyes and ears'' monitoring care.
While fees vary according to complexity, distances travelled and the time of day, the service costs about $100 an hour.

Most hospitals already offer patient liaison officers to help people with concerns during business hours, but they are employed by the hospitals, so represent their employer's interests as well as those of the the patients.
Ms Crocker realised there was a gap in the market when she helped a relative through complex care.
''People are not people any more, they are a patient to be moved through,'' she said. ''You might have a relationship with a clinic these days, but not one doctor, so the burden is really on the patient to ensure there is continuity in their care.''
Ms Crocker said she had helped a range of people requiring everything from one phone call to sort out a problem right through to those needing meetings with several parties. In one case, she helped a family move a patient to a hospital closer to his home so his wife could visit more regularly. She also helped a patient whose illness persisted after 14 operations to find alternative care.
The patient advocates have a range of legal, healthcare and advocacy backgrounds, and do not provide medical or legal advice or make decisions for people. While initial phone calls are often met with wariness and suspicion, Ms Crocker said most health professionals found an advocate's presence helpful in the end.
Jan Ireland, a midwife with more than 30 years' experience, said an increasing number of women used this service because they wanted to avoid particular interventions in hospital or had had a traumatic birth in the past and wanted help to change their next experience.
Dr Hambleton said he was concerned about the trend because doctors and other healthcare workers should be trying to accommodate patients' needs and listen to their concerns as a matter of course.
He said while the health system was under pressure with significant shortages of GPs and other services in particular areas, the answer was to add more resources to the system, not private advocates.
''Good medical practice is founded on quality communication between doctors and patients so I accept that this service exists, but I would hope it is unnecessary,'' he said.

http://m.smh.com.au/national/health/doctors-lament-rise-of-private-patient-advocates-20121229-2c0de.html?goback=.gmr_3106684.gde_3106684_member_203244019