ReportWire

Tag: self-advocacy

  • Advocating for Yourself With Metastatic Breast Cancer

    Advocating for Yourself With Metastatic Breast Cancer

    [ad_1]

    With advanced breast cancer, it’s important to speak up for yourself. This is called self-advocacy, and it involves making your views, needs, desires, and interests known.

    Self-advocacy not only leads to better care, but it can turn feelings of hopelessness and helplessness into hope, empowerment, and healing.

    Here’s how to advocate for yourself with advanced breast cancer.

    Educate Yourself

    Learn as much as you can about advanced breast cancer.

    “Knowledge is power,” says Diana Abehssera, a breast cancer survivor and patient experience lead for Leal Health. 

    Educating yourself makes it easier for you to make informed decisions about your treatment, which may lead to a better outcome. Start with your doctor. Ask questions about things you don’t understand. Do research online. Visit websites for nonprofit organizations like the American Cancer Society, National Coalition of Cancer Survivorship, and Susan G. Komen.

    Learn about your treatment options. “Advanced, cutting-edge treatments may be available to you, some of which may be outside of your normal hospital setting,” Abehssera says.

    Advocate for Yourself at Your Doctor’s Office

    “Be a partner to your doctor in your health care decisions,” says Abehssera. “During cancer, the stakes are high, and you should absolutely have a say in your treatment plan.”

    Try these tips for self-advocacy with your doctor:

    Take notes before appointments. Organize your thoughts. Jot down a list of questions. Be ready to communicate.

    Speak up at your doctor’s office. Ask questions, take notes, and speak up if you don’t understand something. Be clear about your needs, preferences, thoughts, and feelings.

    Seek out second opinions. This is especially important if you have a complex case.

    Be open to new treatments and clinical trials. Finding the best care may mean participating in a clinical trial, which can give you access to cutting-edge therapies.

    Know Your Body

    Knowing your body is an important step in taking care of it and making sure you get the care you need. Keep a symptom diary. If you have new symptoms that don’t get better in a couple of weeks, or if you feel like something is wrong, talk to your doctor.

     

     

    Talk to Family and Friends

    “Family members are affected by your diagnosis, too,” says Rebecca Crane-Okada, PhD, an advanced oncology certified nurse in Santa Monica, CA. “Sometimes the whole family needs to get together and talk about changes that will make things better for the whole.”

    Your closest friends and family members are an important part of your well-being and care, so it’s important to speak up about what you need.

    “Be as clear as possible about what kind of support you want and from whom you want it,” says Louise B. Lubin, PhD, a clinical psychologist in Norfolk, VA, and author of Your Journey Beyond Breast Cancer: Tools for the Road.

    Try these tips to get support from friends and family:

    • Accept help. Remember that people generally want to help and helping feels good.
    • Be specific about what you need.
    • Make a list of tasks they can do for you.
    • Let them know if you need physical, emotional, or spiritual support.
    • Ask one person to be the designated communicator who shares updates with others.
    • Ask for help with chores like childcare, cleaning, cooking, and grocery shopping.
    • Keep a calendar with all your appointments and things you need help with.

    It may help to have family counseling sessions. “Remember, cancer is a family affair,” says Lubin.

    Speak Up for Yourself at Work

    If you choose to work, you can make things smoother by speaking up for what you need. Talk to your manager or human resources department. Maybe it’s a flexible work schedule or an alternating schedule that helps you create a better work-life balance, says Crane-Okada.

    You may need accommodations at work. Find out what you’re entitled to and how to get them by talking to your doctor and learning more about the Family Medical Leave Act, short-term disability, and long-term disability.

    Take Care of Your Financial and Legal Needs

    Advocating for yourself also means getting organized, making decisions, and planning for the future. When you have your affairs in order, you have more freedom to focus on what’s really important to you.

    Do you need to file for disability insurance? Do you need a trusted family member to pay your bills, follow up with insurance, or take care of your other accounts?

    Talk to people who can help you put things in order, like a disability expert, financial expert, estate planner, or lawyer.

    Carve Out Time for Yourself

    Taking care of your desires and needs also means enjoying things that make you happy.

    “Making time for family, fun, and things you find enjoyable is just as important as making time for treatment and follow-up visits,” says Crane-Okada.

    Prioritize joy by doing the little things that make you feel better. Take yourself out to your favorite coffee shop. Pick up a bunch of your favorite flowers. Go the park. Being outdoors, especially in nature, can help you feel good.

    [ad_2]

    Source link

  • Advocate for Yourself at the Doctor

    Advocate for Yourself at the Doctor

    [ad_1]

    Although advocating for yourself is essential with any health concern, when the diagnosis is human epidermal growth factor receptor 2 (HER2)-positive breast cancer, it’s even more important.

    On March 27, 2006, Janet Shomaker felt a lump in her breast. A few weeks later, she was diagnosed with invasive ductal carcinoma. She also learned the cancer was HER2-positive, which meant it contained a protein that encourages the growth of cancer cells making it more aggressive than other forms of cancer.

    At the time, Shomaker was 44 years old, mom of two young children, and co-founder of a national research company. In those first shell-shocked days, a good friend and cancer survivor encouraged her to be “responsibly selfish” – a term she would come to understand in the months that followed.

    “I had the personality that I can do most things on my own and I don’t need help,” she says. “Being responsibly selfish meant taking control of my treatment plan while I allowed friends and family to care for me and my family.”

    Shomaker believes that being responsibly selfish helped her get the best possible medical care. Here, cancer experts share five important ways to act and advocate for yourself when you’re diagnosed with HER2-positive breast cancer.

    Learn from trusted sources

    Once you get over the initial shock of diagnosis, it can be empowering to learn as much as you can about your type of cancer and its treatment. Just make sure you have access to credible sources.

    “Rather than searching HER2-positive online and going down a rabbit hole, the first-line source for information is your physician,” says William J. Gradishar, MD, FASCO, FACP, at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University and chair of the NCCN Guidelines Panel for Breast Cancer. “Your health care team can refer you to sources to do more reading.”

    If the task of researching becomes overwhelming, ask a family member or friend to help sort through the information as you prepare for upcoming appointments.

    Prepare questions for each appointment – and ask them

    Susan Brown, MS, RN, is senior director, Education & Patient Support, Susan G. Komen Foundation. She advises women who are newly diagnosed to do their homework and then compile a list of questions for their doctors. Depending on where you are in your diagnostic or treatment journey, these questions might include: 

    • What is my exact diagnosis?
    • What tests were done?
    • Can I have a copy of my pathology report? (The answer is “Yes!”)
    • How will you share medical information with me?
    • What is the best way to contact you? Can I call after hours?
    • What are the treatment options based on my type of cancer?
    • Are there clinical trials I can participate in?
    • What are the risks and benefits of each treatment?
    • Will the cancer be surgically removed?
    • Will I need treatment before surgery?
    • How will you decide about my cancer treatment before and after surgery?
    • How long will I have to undergo each treatment?
    • What type of side effects might I experience, and what can I do to minimize them?

    Take a second set of ears

    With questions in hand, you may feel ready for your doctor’s appointment, but don’t go alone. “Identify an advocate to help you ask questions,” Brown says. “This person should accompany you to doctor’s appointments, take notes, and ask questions you might forget. You can also ask your doctor if you can record your conversation.”

    Brown suggests naming one or more advocates in your medical record by signing a HIPAA release or emergency contact form. This gives your health care team permission to talk about your condition and treatment with the people you’ve listed.

    Share your thoughts about treatment
    It may be especially important to bring along that second set of ears when you have your initial appointment with your oncologist. Recent advances in HER2-positive treatment mean there are numerous tailored therapies to consider.

    “There are a variety of drugs that have been developed in the last few years, especially for those who have been diagnosed with metastatic (advanced) HER2-positive breast cancer,” Gradishar says. “At this point your question becomes: ‘How do we decide which treatment is best for me?’”

    Some therapies are recommended to begin prior to surgery, depending on whether you have early-stage or advanced HER2-positive breast cancer. Your oncologist will review your options with you, but ultimately, you must decide on your treatment.

    “It’s important to speak up and share your priorities with your doctor,” Brown says. “Your values and lifestyle will contribute to the type of treatment you undertake and when.”

    Seek a second opinion

    Although your treatment team is there to guide you throughout your journey with HER2-positive breast cancer, you are always in charge. “You can hire and fire,” Brown says. “You can get a second opinion to affirm your diagnosis or provide a different point of view. Or you might decide to meet with another doctor who is a better fit for you.”

    For example, if you are a transgender woman, you may be more comfortable with doctors who are sensitive to your specific needs. The National LGBT Cancer Network provides a directory of cancer facilities that welcome transgender patients.

    If you want a second opinion, your insurance company may identify preferred doctors in your area. Also, you can ask for a second opinion from another pathologist, and some facilities even offer second opinions virtually by reading the pathology.

    For Shomaker, researching, asking friends and family to accompany her to appointments, and always being willing to ask tough questions helped her find the best possible treatment for her HER2-positive breast cancer.

    Now, more than 16 years after her diagnosis with HER2-positive breast cancer, she is still advocating for herself and others by sharing the advice that guided her. “Getting diagnosed with HER2-positive breast cancer can be overwhelming and scary,” Shomaker says. “Advocating for yourself is empowering and can change the outcome of your treatment.”

    [ad_2]

    Source link

  • Fighting the Stigma of MS

    Fighting the Stigma of MS

    [ad_1]

    By Caroline Craven, as told to Hallie Levine

    I learned I had MS almost 20 years ago, in 2001. I was only 35, yet I couldn’t walk or see without assistance.  Today, I’m thriving. It’s so important for patients with MS to know that their diagnosis is not a death sentence. With the proper treatments, the disease can be controlled, and you can continue to live your best life.

    After my MS diagnosis, I had to reinvent my life. I had to give up my marketing career — I couldn’t work in an office 8 to 10 hours a day with my sensory overload and fatigue. Before MS, I was a whitewater kayaker, mountain biker, and rock climber. Suddenly, I found myself so exhausted I could barely walk from my car to the parking lot.

    I enrolled in a 3-year, double-blind study at the University of Southern California for a T-cell vaccine.  After the study, I was told I was on the placebo. But since I was doing better than most and definitely better than when I was first diagnosed, my neurologist joked that I should be a poster child for MS. I took her advice literally: I became a certified life coach and created a blog, GirlwithMS.com, to provide helpful information on how to live better with MS, including recipes, life hacks, and resources.

    Why There’s Still a Stigma

    It’s actually gotten better over the last decade, especially among medical providers who better understand what it’s like to live with MS. They realize now that treatment for MS involves more than just taking a pill or getting a shot. In order to thrive, people with MS need to learn life skills and get community support. You don’t really know what it’s like to live with MS unless you walk in someone’s shoes. Some of us are relatively physical and able to stay active, while others need wheelchairs.

    Unfortunately, the general public still doesn’t know much about MS. People confuse it with muscular dystrophy, for example — one of the questions I get asked a lot is, ”Are you part of Jerry’s Kids?” One reason that it’s tough to understand is because there are so many unknowns about the course of MS. When you first get your diagnosis, you have no idea if your illness will be invisible to others, you’ll lose your coordination, or if you’ll be confined to a wheelchair.  

    Even when people know what it is, they often have a romanticized view of it. They think of celebrities like Selma Blair. But the public doesn’t see the part where those people have trouble walking from the parking lot into a store, or the sideways glances they get when they use their cane.

    Challenging Misconceptions

    The best way to push back against these sorts of misconceptions is to be straightforward with those around you. As an example, one of my biggest problems is sensory overload. Imagine standing in a room with strobe lights and sound blasting. That’s how I often feel when I’m in a busy environment or interacting with others. I tell folks that my MS is like a battery that I need to recharge often. When I get too tired, I need to take a time out and lie down in quiet to cut down on the sensory overload. When I explain it like this, it helps people understand what it’s like for me.

    In another example, many people with MS are sensitive to temperature. It may not seem that hot out to others, but it may cause you to feel tired, make your vision blurry, and give you trouble with your balance. It’s important for your family, employers, and friends to know things like that. You may have to tell them more than once so they can understand. Don’t be afraid to do that, and to ask for help when you need it.

    How You Can Advocate for Yourself

    The first step is to find a doctor you feel completely comfortable with. Once you’ve found your doctor, keep a running list of questions and notes to run by them when you have an office visit. So many of us are afraid to tell our doctor that our current treatment doesn’t seem to be working or we’ve had a very cruddy week.

    I also recommend keeping up with the latest medical news on the National Multiple Sclerosis Society website (nationalmssociety.org). This way, you can discuss promising new treatments with your doctor. You also need to make sure they know about and are on board with any supplements or complimentary treatments you use.

    Change Your Focus for Your Best Life

    Now, as a person and expert living with MS, my work takes me across the country, consulting and speaking to help others with the disease live better. It brings back memories of my early career, when I worked with startup companies, and it’s exciting and inspiring. The bottom line is that MS is a random, progressive disease. We, as people with MS, can’t control where it takes us. But we can focus on how to live our lives better.

    [ad_2]

    Source link