(BPT) - Caring for a loved one with a chronic illness is something millions of Americans do every day. Whether it is a parent, spouse, extended family member or friend, the stress of caring for another adult can take a toll.

"I have to do absolutely everything for her," explains Anthony Cowels, whose 71-year-old wife, Florence, was diagnosed with multiple sclerosis in 1986. As he watched her disease progress, his caregiver responsibilities grew. What's more, for some of the years Cowels also cared for his elderly parents, compounding his responsibilities.

"It has been a long journey of caregiving," says Cowels, 70. "I try not to let it overwhelm me. I always look for ways to do better." Cowels learned to care for both himself and his wife better through useful tools, education and friendship and by joining a caregiver support group. He says he can "interact with others who identify with my situation.”

Family caregiving: A growing trend

Cowels represents a growing number of Americans who care for older or aging loved ones. About 41 million family caregivers in the United States provided an estimated 34 billion hours of care to an adult with limitations in daily activities in 2017, notes the AARP report Valuing the Invaluable: 2019 Update. What's more, as the population ages, caregiving demands are increasing while the pool of potential caregivers is decreasing.

As the Valuing report states, "Americans will have more older relatives or close friends to potentially care for than children in about 15 years. The U.S. Census Bureau projects that, by the year 2035, adults ages 65 and older will outnumber children under the age of 18 for the first time in U.S. history. This fundamental demographic shift is the result of the aging of the U.S. population, increasing longevity, and a declining birth rate. "

Caring for yourself

In addition to helping with self-care activities like bathing, dressing and going to the bathroom, family caregivers today often perform complex medical tasks, including wound care, giving injections and handling medical equipment. The tasks that were once provided in hospitals and health care clinics are increasingly the responsibility of family and friends, who are often given little training or support.

While many family caregivers often report positive feelings in their role such as a sense of purpose or connection with their loved one, it often comes with feelings of being overwhelmed. Exhaustion, worry, loneliness and financial stress are common challenges caregivers face. If you also work a full-time job, it can be even more difficult to balance your needs and responsibilities.

While you may not achieve perfect balance, it is important to prioritize your physical and mental wellbeing, so you can be there for the person you care for. These first steps can help you find some balance as you navigate your caregiver journey:

• Join a support group. Ask your health care provider about local options. Community centers are another good resource. If you live in a remote area or have difficulties commuting, online support groups are another useful way to connect with others in similar situations.
• Make time for yourself. When you care for another person and have your own life demands, it can feel as though there is little time left in the day for yourself. Even if it is just 15 minutes, make time to do something you enjoy, such as walking or reading.
• Don't be afraid to ask for help. No one person can do it all. It takes a team to care for someone, especially those with complex medical conditions. You can start by asking your provider about local health care resources and reach out to family and friends for assistance.

It is important for family caregivers to stay mentally and physically healthy so they can provide the best care possible to the growing number of people who need support. For helpful tips and caregiver resources, visit www.aarp.org/caregiving.

Understanding Rare Cancers

Four facts to know about one type of rare cancer, soft tissue sarcomas

(Family Features) Although rare cancers don’t occur often, they can affect people of all ages and genders.

A rare cancer is defined as fewer than 15 new diagnoses per 100,000 people per year, according to the National Cancer Institute (NCI). Additionally, as noted by the American Cancer Society (ACS), the 5-year survival rate is lower for people diagnosed with a rare cancer than for people living with more common cancers. Greater awareness of rare cancers may lead to earlier diagnosis and management, and potentially better survival rates.  

1. There are more than 50 types of soft tissue sarcomas (STS). STS account for about 1% of all cancers and affect soft tissues such as muscle, fat, nerves, blood vessels and skin. Although STS can be found in any part of the body, they are often in the arms or legs, internal organs, the back of the abdominal cavity or in the trunk, head and neck area.

If you have recently been diagnosed with STS, it’s important to ask your doctor for more information about the specific sub-type you have. For example, if you received a diagnosis of undifferentiated sarcoma, ask your doctor for an integrase interactor-1 (INI1) test to see if you have a rare STS called epithelioid sarcoma (ES). (See sidebar for more on ES.)

2. STS can be visible or invisible depending on location. STS may appear as painless bumps under the skin, usually on arms or legs. Some sarcomas begin in the abdomen and typically don’t show symptoms until they grow and press on nearby organs, nerves, muscles or blood vessels. When this occurs, symptoms may include pain and trouble breathing.

3. Early diagnosis can help inform disease management. As with other types of cancer, early diagnosis of STS is key, as earlier treatment may result in more favorable outcomes. Because other conditions can cause similar symptoms, it’s important to check with your doctor if you are experiencing any of the warning signs listed above. If your doctor decides it’s best to “watch and wait,” consider developing a six-week follow-up plan in partnership with your health care team if your symptoms have not improved.

4. Seeking care from a specialist is key. Given the rarity of STS, finding a sarcoma specialist who understands the complexity of this rare disease and can help determine which treatment option is best for you is important. Treatment options depend on multiple factors, including your overall health, the location and type of tumor, its size and whether the disease has spread elsewhere in the body. STS are typically treated with a combination of options including chemotherapy, radiation therapy and surgery. A specialist may also speak to you about participating in a clinical trial where investigational therapies in STS are being studied.

Learning More About Epithelioid Sarcoma

A rare type of STS, epithelioid sarcoma (ES) accounts for less than 1% of all STS, which themselves account for approximately 1% of all cancers, according to research published in “Archives of Pathology & Laboratory Medicine.” ES can present as a lump or sore on the skin.

Notably, more than 90% of ES tumors do not express the INI1 protein, which when present acts to suppress tumor growth. INI1 loss plays an important role in the diagnosis of ES, according to researchers with “The American Journal of Surgical Pathology.”

Data from the NCI indicates that approximately 150-200 people in the United States are diagnosed with ES each year. Research published in “The Journal of Clinical and Aesthetic Dermatology” found the disease often occurs in young adults in their 20s and 30s. Because most ES patients are adolescents and young adults, there is a gap in the unique psycho-social needs for this patient population, including resources for patients who miss school while undergoing treatments, as well as fertility considerations later in life.

If you or someone you love is living with ES, you can find resources, information and the real-life perspective of an ES survivor at ESsentialsforES.com.

Content courtesy of Epizyme, Inc.

Photo courtesy of Getty Images

(BPT) - As a commercial airline pilot with nearly 30 years of experience, Diane Sandoval, 50, is no stranger to making difficult decisions. However, she faced one of her toughest challenges not in the skies, but when she discovered a small lump in her left breast during a self-examination. Her worst fear was confirmed after a visit to her doctor when she was diagnosed with early-stage breast cancer.

Following an inconclusive mammogram and ultrasound, Sandoval learned she had several small tumors. She underwent a mastectomy to remove the tumors followed by breast reconstruction, putting her piloting career on pause.

The next big question was whether she should receive chemotherapy or not. Her physician recommended a genomic test — the Oncotype DX Breast Recurrence Score test. This tool has been proven to determine whether chemotherapy will be beneficial for individuals recently diagnosed with early-stage breast cancer. The test provides a personalized score based on the biology of the patient’s tumor that can help tailor treatment decisions for their individual cancer. Recent results from the largest breast cancer study ever conducted, called TAILORx, confirmed that the test clearly identified the 70 percent of women with early-stage breast cancer who receive no benefit from chemotherapy, as well as the remaining 30 percent of women for whom chemotherapy can be life-saving.

Sandoval is one of the nearly 1 million women who has put chemotherapy to the test with this genomic test. Her score confirmed that her risk of experiencing a breast cancer recurrence was low and she would not benefit from chemotherapy. As a result, she felt confident that she could forgo chemotherapy and its associated side effects. Subsequently, she was able to resume her career as a pilot and her active lifestyle.

She recently joined a campaign called “Put Chemo to the Test” to raise awareness of the Oncotype DX test and encourage women recently diagnosed with early-stage breast cancer to ask their doctor to order it before finalizing their treatment plan.

“I hope to help women with early-stage breast cancer better understand their treatment options by raising awareness of this test and how it can determine whether they are part of the majority of patients who may be spared chemotherapy and its well-known side effects or are among the important minority of patients who could receive life-saving benefit from chemotherapy,” said Sandoval.

One in eight U.S. women will develop invasive breast cancer in their lifetime. The treatment of invasive breast cancer should be personalized because what is best for one woman may not be right for another. If you have breast cancer, it's important to take an active role in your health by learning about your available treatment options. An ongoing, collaborative discussion with your doctor is key in determining what treatment option best fits your individual needs. Below are a few questions to ask your doctor:

• What stage is my breast cancer and what are the chances of my cancer recurring (coming back) after surgery?
• Can you order the Oncotype DX test to determine if I will benefit from chemotherapy?
• What are my treatment options? What do you suggest for me and why?
• What are the benefits of each treatment option? What are the drawbacks/side effects of each one?

Breast cancer patients and caregivers can visit ChemoYesorNo.org to download the full physician discussion guide and learn more about the test.

“I want women who were recently diagnosed with early-stage breast cancer to know that there is no one-size-fits-all treatment approach,” said Sandoval. “The test gave me the confidence I needed to forgo chemotherapy, which has allowed me to continue to enjoy my life with my husband. Ask your doctor to order this genomic test before finalizing your treatment plan.”

Health Care Solutions for Rural Americans

(Family Features) Heart disease, cancer, unintentional injuries, chronic lower respiratory disease and stroke. These top five causes of death in the United States all have a higher incidence of death among rural residents and research points to lack of access to health care as a culprit.
Today, rural hospitals are closing at a rapid pace, expanding an already vast health care desert (defined as inhabited areas more than 60 minutes away from an acute care hospital) across the country.

According to the University of North Carolina’s Rural Health Research Program, since 2010, more than 105 of America’s 1,700 rural hospitals have closed. Additionally, a Navigant report found that 21% of rural hospitals are at high risk of closing unless their financial situations improve.

Every day, rural Americans find themselves farther from medical care.

Practical challenges facing patients

Fatal injuries and illnesses aside, rural residents face other practical concerns related to the health care in their communities.

• Doctors are more concentrated in urban areas, while there are shortages in rural communities. A shortage of doctors can mean less availability for appointments, difficulty capturing enough attention from a busy provider, longer distances to reach a physician and limited access to specialists.
• Statistically, rural residents tend to be older and need more frequent visits to their primary doctors and other specialists.
• Pregnant women have to travel even farther to deliver a baby, leading to an increased risk of complications at birth. Similarly, pre-natal and post-natal care are harder to access.
• Rural residents often enjoy more outdoor activities (such as hunting, hiking and riding ATVs) than urban residents and therefore are at a greater risk of injury that requires treatment at a trauma center.

Airborne answer

One solution to fill the gap in rural health care is air medical services, which transport patients to critical care facilities in minutes. With nearly 90% of patients transported living in rural areas, air ambulance services are an essential part of health care access in these communities.

However, just like rural hospitals, air ambulances are threatened as well. Medicare and Medicaid reimbursement rates have remained steady for decades, while operational costs required for air medical services have increased, creating a financially unsustainable situation. Some private insurers also refuse to cover air medical services or pay minimal costs, requiring patients to assume the balance.

How to take action

The challenges facing rural health care access may be significant, but rural residents can take individual actions to make a difference for themselves, their families and even their communities.

• Express support to elected officials. Rural residents can call or write letters to their senators and representatives and demand they keep local hospitals open and protect access to air medical services. Reaching members of Congress at their local offices may be more effective than contacting their federal offices.
• Support efforts to secure grants. Some universities have been given grants from the Health Resources & Services Administration, an agency of the U.S. Department of Health and Human Services, to create or expand community health initiatives and facilities in rural areas.
• Explore alternative sources of care. Many rural areas have community health workers who complete home visits to assist people with chronic diseases like diabetes and high blood pressure. Although their training is limited compared to that of a doctor or nurse, their service increases health care access and they’re able to spend more time with patients.
• Get educated about your care. One role of community health workers is teaching patients about how to manage their own medical needs. This education helps residents be proactive and preventative in their health care, which can reduce the need for hospitalizations in certain cases, such as learning how to properly manage diabetes.
• Make an emergency plan. For families who reside in a rural community, it’s a smart idea to have a plan in place for how to respond in the event a medical emergency. The plan should include information about the location of the closest hospital, emergency contact information in the community and other details necessary to gain emergency care.
• Consider remote access care. Another option for both rural and urban residents alike is telemedicine, which allows patients to connect with a doctor or nurse virtually using technology and without having to travel. The two-way communication can facilitate evaluation and treatment for minor conditions. The service is offered as a cost-saving incentive through some insurance plans, as well as private providers.

Protecting Patients Against the Unexpected

With increasing frequency, insurance companies are not covering the full cost of medical emergencies, leaving families with out-of-pocket expenses they didn’t expect.

If you need medical transport and a physician or first responder determines air evacuation is the best – or only – option to get you to care, you shouldn’t have to worry about the bill you’ll receive afterward. Many emergency service providers have support efforts in place to help you focus on recovery, not finances.

For example, many air medical companies provide patients access to their patient advocates, who work with the patient’s insurance provider to properly cover air medical transport, taking the patient out of the middle. This process can result in significantly lower costs for the patient, often amounting to just the usual copay and deductible.

Visit globalmedicalresponse.com/protect-patients to learn more about these services in your area.

Photos courtesy of Getty Images (doctor and man, woman speaking with doctor on computer)

Understanding Common Myths About Prostate Health

(Family Features) When it comes to your health, misconceptions about treatment options and their potential side effects can have a negative impact on your overall wellbeing. One common condition that is shrouded by misinformation is benign prostatic hyperplasia (BPH). Also known as enlarged prostate, BPH is a non-cancerous enlargement of the prostate that typically occurs as men age causing bothersome urinary symptoms such as a frequent need to urinate day and night, weak flow, difficulty starting urination, an urgent need to go, and other symptoms. The condition affects more than 40 million men in the United States alone with more than 40 percent of men over 50 and 80 percent of men over 70 suffering from BPH.1,2,3

However, some men and women are not entirely familiar with available BPH treatment options beyond medication, according to surveys conducted by NeoTract, Inc., a wholly owned subsidiary of Teleflex Incorporated and manufacturer of the UroLift® System. Survey results show that half of men diagnosed with BPH reported their doctors informed them of medication as a treatment for BPH, while only 8 percent said their doctors spoke with them about minimally invasive outpatient treatment options.

“Medication is often the first-line therapy for enlarged prostate, but relief can be inadequate and temporary,” said Gregg R. Eure, M.D., F.A.C.S. of Urology of Virginia and Eastern Virginia Medical School, a paid consultant of NeoTract, Inc. “Patients can experience headaches or dizziness when taking BPH medication, as well as other negative side effects such as sexual dysfunction, often causing them to quit taking BPH medication altogether. Fortunately, there are alternative treatments, like the UroLift System, to medication for men with BPH that can break the cycle of side effects caused by medications, enhancing a man’s quality of life without the risk of more invasive surgery.”

The symptoms of BPH can cause loss of productivity, depression and decreased quality of life. In addition, if left untreated, the condition can worsen over time and lead to permanent bladder damage.4

If you’ve been diagnosed with, or think you might have BPH, understanding your options and the potential impact on your health and quality of life is the first step in treatment. Arm yourself with these facts before scheduling time to consult with your doctor:

Myth: BPH is linked to prostate cancer.
Fact: BPH is noncancerous and unrelated to prostate cancer,5 but the symptoms of BPH can greatly affect a man’s quality of life.

Myth: Medication is the only first-line treatment for BPH.
Fact: There are alternative treatments to medication for men with BPH, including the minimally invasive UroLift System, which is clinically shown to rapidly and effectively treat urinary symptoms while preserving sexual function with no instances of new onset, sustained erectile or ejaculatory function.6,7 Results from multiple studies of diverse patient populations are consistent with data from the randomized L.I.F.T. Study, demonstrating the safety and effectiveness of the treatment for patients with BPH in a real-world setting.

Myth: Delaying treatment of BPH doesn’t cause bladder damage.
Fact: If left untreated, BPH can worsen over time and cause permanent bladder damage.4

Myth: There are no minimally invasive procedures available to treat BPH.
Fact: An option like the UroLift System is a minimally invasive outpatient treatment that can be performed in an office setting under local anesthesia in about an hour. An alternative to medical therapy, the treatment can relieve prostate obstruction and open the urethra without cutting, heating or removing prostate tissue.

For more information about BPH treatment options, or to find a physician near you that treats this common condition, visit UroLift.com.

Photo courtesy of Getty Images

1 Berry, J Urol 1984 and 2017 U.S. Census population estimates.
2 NeoTract US Market Model estimates for 2018 based on IMS Health Drug and Procedure data
3 http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-key-statistics, Berry SJ, et al., J Urol. 1984; 132; 474-479
4 Tubaro et al., 2003 Drugs Aging
5 Chang, The Practioner 2012
6 McVary, J Sex Med 2014
7 Roehrborn, J Urology 2013 L.I.F.T. Study