Testicular Cancer Awareness

As we close out Testicular Cancer Awareness Month, our partners at the Testicular Cancer Foundation share valuable information about testicular cancer awareness, prevention and detection.

Did you know that testicular cancer is the most commonly diagnosed cancer for men that fall between the ages of 15 and 34? Affecting those early in their lives, it’s important to detect signs of testicular cancer as soon as possible, starting the journey to survivorship. April is Testicular Cancer Awareness Month, and in an effort to help spread the word about steps to finding, diagnosing, treating and coping with this life-altering circumstance, Tommy John is partnering with the Testicular Cancer Foundation (TCF) to continue and strengthen our support of men.

Testicular cancer is the growth of malignant cells in one or both of the testicles. This directly impacts the male reproductive system and can alter lives in many ways, just as with any cancer diagnosis. Early detection is key, and it starts by being informed. Approximately one male is diagnosed with this cancer every hour, and on average, one male dies each day from this disease. However, it’s important to note that testicular cancer is one of the most beatable cancers when identified early. That being said, let’s take a look at methods for performing a quick self-check, as a proactive step before seeing a doctor or urologist. As always, be sure to consult a doctor for a proper diagnosis.

Testicular Cancer Awareness

 

Self-checks are an important step to taking control of your health and staying proactive when it comes to a potential cancer diagnosis. If diagnosed, one’s life can be understandably turned upside down. A common stigma that men often face, is that testicular cancer can negatively impact their manhood. This mindset can make it difficult to ask for professional help. However, with proper treatment, one can quickly work towards a healthy recovery. As TCF confirms, “The good news is that after surgery, and the potential treatment, the majority of men return back to a normal healthy life including, recreation/hobbies, work, sex, and family life.”

If diagnosed, what comes next? Cancer affects an individual on both a mental and physical level. Survivor Scott Lazerson urges, “My #1 recommendation for anyone facing cancer is positivity. Being positive is the biggest game-changer of life.” A healthy mindset can make a huge impact when embarking on a path to full recovery. What about the physical impact? The infected testicle, and in some cases other infected areas, are removed and sent for testing to determine that stage and nature of the cancer. This will help doctors to identify the best mode of treatment, whether this be surgery, post-op chemotherapy or further testing to determine the return of malignant cells. TCF has supplied many post-op TC patients with our Tommy John underwear in an effort to encourage a comfortable recovery. Research has also shown that proper-fitting underclothes can provide several other health benefits. Check out TJ underwear here, as well as our design dedicated to TCF. A portion of these purchases go towards the treatment, research and care associated with testicular cancer. Explore our #KnowYourBalls campaign for more information.

One of the most important points to keep in mind is that there is hope. Again, diagnosis and the most-effective path to recovery will be different for every individual and can only be determined under the care of a doctor. In the meantime, TCF educates men and offers support for early detection and prevention, noting that, “living a healthy lifestyle is a huge proponent to reducing your risk for all types of disease including testicular cancer. Being an advocate for your own health and knowing your body is extremely important.” There are many resources available to stay educated on this cancer, as well as support for those diagnosed and recovered. Take action today to ensure your personal health as well as the health of the men in our lives.

When Adult Children Get Sick, It May Be Hard For Parents To Get Information

When Sean Meyers was in a car accident on a November evening three years ago, he was flown by air ambulance to the emergency department at Inova Fairfax Hospital, in Northern Virginia. With his arm broken in four places, a busted knee and severe bruising to his upper body, Meyers, 29, was admitted to the hospital. While badly hurt, his injuries didn’t seem life threatening.

When his car went off the road, Meyers had been on his way to visit his parents, who live nearby in Sterling. They rushed to the hospital that night to wait for news and to be available if Sean or the hospital staff needed anything. But beyond the barest details, no one from the hospital talked with them about their son’s condition or care, not that night nor during the next 10 days while he was hospitalized.

“All the time he was there, the hospital staff was very curt with us,” said Sam Meyers, Sean’s dad. “We couldn’t understand why we were being ignored.”

After leaving the hospital, Sean moved into his parents’ spare bedroom temporarily to continue his recovery. About a week later, he was in their kitchen one evening with his girlfriend when suddenly he collapsed. He was rushed to the nearest hospital, where he died. An autopsy revealed that he had several blood clots as well as an enlarged heart.

For Sean’s parents, the results were particularly wrenching because there’s a history of blood clots on his mother’s side of the family. How much did the hospital staff know?

“It might have saved his life if they’d talked to us,” Sam Meyers said.

A spokeswoman for Inova Fairfax said, “We cannot comment on specific patients or cases.” But she noted that information about a patient’s care can be shared in a number of circumstances.

These days, when people think about patient privacy problems, it’s usually because someone’s medical record has been breached and information has been released without their consent. But issues can also arise when patient information isn’t shared with family and friends, either because medical staff decide to withhold it or patients themselves choose to restrict who can receive information about their care.

The federal Health Insurance Portability and Accountability Act of 1996 (HIPAA) established rules to protect the privacy of patients’ health information while setting standards for hospitals, doctors, insurers and others sharing health care information.

Stepped-up enforcement in recent years and increased penalties for improper disclosure of patient information under HIPAA may lead hospitals and others to err on the side of caution, said Jane Hyatt Thorpe, an associate professor at George Washington University’s department of health policy and an expert on patient privacy.

“For a provider who’s uncertain about what information a provider may or may not be able to share, the easiest and safest route is to say no,” she said.

However, the law is actually quite permissive about providers disclosing information to family members and others who are involved in a patient’s care, said Thorpe.

“If the physician thinks it’s in [the] patient’s best interest to share information with mom or dad or whatever, they may do so,” she said.

They may also decide not to share information, however.

Generally, if a patient is unconscious and unable to give permission to discuss his medical information, a doctor may share details about his health with family and friends. But even if the patient is alert and able to make a choice, a health care provider can use discretion in deciding how much to tell family and friends.

Dr. Wanda Filer, president of the American Academy of Family Physicians, recalled a patient who was an HIV-positive sex worker who didn’t want his family to know about his health, even as he was dying. She honored his wishes. “The family was left in the dark,” she said.

State laws may be more restrictive than HIPAA, requiring patient permission to disclose information to others, said Elizabeth Gray, a research scientist at George Washington University’s department of health policy. However, Virginia law generally follows HIPAA on disclosures, said Gray.

In Sean Meyers’ case, there are unanswered questions. For example, “we don’t know what the patient actually said to the providers,” said Filer.

“HIPAA does allow information to be shared with family or friends based on the patient’s wishes or, if the patient cannot make his/her wishes known, then based on the family member’s or friend’s involvement in the patient’s care,” the spokeswoman for Inova said. The health system’s privacy policy states that it may disclose a patient’s medical information to a friend or family member as permitted under HIPAA and provides details about how to request a form to restrict such disclosures.

There’s no surefire way to avoid lapses in communication or ensure that providers get all the relevant information about a patient’s health. Most smartphones today allow people to store health care information that can be accessed by emergency personnel, said Joy Pritts, a privacy consultant who is a former chief privacy officer in the Office of the National Coordinator for Health Information Technology at the federal Department of Health and Human Resources. In addition to listing allergies and other health concerns, people could state their wishes about disclosing their health information.

In the case of adult children, it may be useful for the child to carry a signed document that authorizes health care providers to disclose and discuss health care information with the parents for a set period of time, said Pritts.

It’s no guarantee, but if a provider is on the fence about disclosing information, “it might help,” said Thorpe.

Please contact Kaiser Health News to send comments or ideas for future topics for the Insuring Your Health column.

Balancing Cancer & School

After a cancer diagnosis, children, adolescents, and young adults are likely to experience triage-cancer-blog-schoolmedical and non-medical complications in school. Therefore, parents and teachers should be aware of the educational issues related to cancer in order to meet their needs.

High-risk Cancers and Treatments

There are some cancers that cause children to have a higher risk of educational difficulties. These include brain tumors, tumors involving the eye or ear, Acute Lymphoblastic Leukemia (ALL), and Non-Hodgkin’s Lymphoma. There are also treatments, such as methotrexate, cytarabine, surgery involving the brain, and radiation to the brain, ear/infratemporal region, cisplatin, or carboplatin, that place children at a higher risk for developing learning and memory problems. In addition, research continues to uncover the connection between cognitive function and treatment for all types of cancer.

Common Problems Areas

The cancers and treatments mentioned above may potentially pose challenges with:

  • Attention/ability span
  • Ability to complete tasks on time
  • Concentration
  • Handwriting
  • Math
  • Memory
  • Organization
  • Planning
  • Problem-solving
  • Processing
  • Reading
  • Social skills
  • Spelling
  • Vocabulary

Dealing with Learning Problems

After treatment, it can be valuable for children to undergo a specialized evaluation by a pediatric psychologist; the examination will reveal how he/she processes and organizes information. If your child or student is having difficulties in school, make an appointment with the parent/teacher to establish a specialized plan. The plan should consist of specifically tailored strategies that will help the child better succeed. Examples of strategies that often help children with cancer-related educational problems are:

  • Seating near the front of the room
  • Modifying the test
  • Prolonging assignment due dates
  • Allowing the use of a calculator, keyboard, or tape-recorded textbooks and lectures
  • Assigning of a classroom aide

There are resources available. For example:

 For more information about navigating cancer and college, visit: http://triagecancer.org/blog/category/education/

Laws That Protect the Rights of Students with Disabilities

The Individuals with Disabilities Education Act (IDEA), the Rehabilitation Act of 1973 (section 504), and the Americans with Disabilities Act (ADA) were established to protect the rights and meet the needs of people with disabilities, such as cancer.

Individuals with Disabilities Education Act

The IDEA provides “free, appropriate public education which includes special education and related services, to meet the unique needs of all disabled individuals between the ages of three and 21” (34 Code of Federal Regulation [CFR], Sec. 300.1[a]). This law focuses on protecting students from kindergarten through 12th grade. To receive these services, children must qualify under one of these disabilities: autism, deaf/blind, deafness, hearing impaired, mental retardation, multiple disabilities, orthopedic impairment, serious emotional disturbance, specific learning disabilities, speech or language impairment, traumatic brain injury, visual impairment including blindness, and other health impairments. If the child qualifies, school districts are required to provide access to special services and accommodations. Children are reassessed every three years.

Rehabilitation Act of 1973 – Section 504

Section 504 of the Rehabilitation Act states that no individual with a disability “be excluded from the participation in, be denied the benefits of, or be subjected to discrimination under any program or activity receiving federal financial assistance or any program or activity conducted by any executive agency” (34 CFR, Sec. 104.4). This law focuses on protecting students from kindergarten through 12th grade and at any or college or graduate school that receives federal funds. Accommodations are provided for students with chronic illnesses such as cancer, and other disabilities that inhibit them from performing one or more major life activities. Some accommodations include extra time for assignments and tests, seating near the front of the classroom, using a calculator, or having a note-taker.

Americans with Disabilities Act (ADA)

This law prohibits discrimination in the workplace, transportation, communication, government, and public accommodations for people with disabilities. As adolescents and young adults begin to seek jobs and pursue their career goals, the ADA can provide protection against discrimination and access to reasonable accommodations. For more information about the ADA and reasonable accommodations, view these Triage Cancer Quick Guides: http://triagecancer.org/QuickGuide-ADA and http://triagecancer.org/QuickGuide-ReasonableAccommodations.

Tech Advances: The Infusionarium & Improving the Patient Experience

InfusionariumIf someone asked you “if you could get your chemotherapy treatment anywhere you can imagine, where would it be?” What would you say? Underwater? In outer space? These questions were the inspiration for the Infusionarium at the Hyundai Cancer Institute at Children’s Hospital (CHOC) in Orange County, California.

The Infusionarium offers kids and teens the opportunity to explore the world all while receiving treatments such as chemotherapy infusions, radiation, and rehabilitation. Patients are able to choose between relaxing in a healing environment, watching TV or movies, and playing interactive video games.  The Infusionarium rooms are lined with screens that can transport you to faraway places, such as the Monterey Bay Aquarium or watching the Jet Propulsion Laboratory’s “Curiosity” rover on Mars! If you choose to spend time in the jungle, when you look up at the ceiling of the room, it’s like looking at the sky through the tree tops.

As more children and teens are surviving pediatric cancers, the need for emotional and psychosocial support has grown. Many other clinics and institutions are working to implement similar strategies to normalize treatment and build positive associations with receiving care and ultimately build strong, resilient people who are not just patients.

Staff members at CHOC have noted that patients using the Infusionarium tend to ask for less medication for nausea, anxiety, and diarrhea. Psychologically, cancer confounds what is considered to be normal adolescent development. As children and teens age, they want to become more independent, but with cancer treatment and care, kids and teens often remain in the phase of needing their parents. The Infusionarium gives patients the opportunity to assert their individuality and connect with other kids and teens facing the same experiences and issues.

At CHOC, the Infusionarium has become so popular that “traffic jams” build up throughout the day, as teens and children wait to use it. This innovative and technological advancement has improved the overall experience patients have during treatment by making the time spent receiving chemo, transfusions, and other medical treatments not just bearable, but interesting and even educational.

College and Cancer: Tips from the Inside

by Michele Rosenthal

One of my former students and advisees has said, “Being a college student is difficult enough. Adding cancer to the mix only makes things harder.”

I have been privileged to call higher education my professional home for many years. My experiences put me in close touch with students, faculty and administrative colleagues. I thoroughly enjoy working with young adults because of their energy, enthusiasm, and drive to move forward in their lives. My administratlibrary-869061_640ive work both in student and academic affairs at institutions in the midatlantic and northeastern regions of the United States has allowed me to support and help college students navigate the academic and student services landscape so that they can maximize their college journey.

In my experience, when college students are diagnosed with cancer, their drive to move forward does not diminish. For some the path may need to be altered or put on hold, but the commitment to complete their degree and move forward is palpable.

This drive is especially important at a time when budget concerns have forced institutions to cut back on resources. On many campuses, there are fewer staff members and many members of the faculty have been tasked with increased administrative responsibilities.

The very good news is that those who choose to work in higher education are committed to education and to doing their best to create academic environments that are conducive to learning despite cut backs and limited resources.

The result of budget cuts sometimes means that students need to work harder to advocate for themselves however. Simply stated, on some campuses in can be difficult to meet with a staff member in person as immediately as one may like or to receive a quick response to an email because personnel have been reduced and workloads are large. In the case of a college student who has been diagnosed with cancer, self-advocacy and tenacity are essential. It is especially important for you to be able to tell your unique story so that a situation can be created to fit your needs.

If you are student who has been diagnosed with cancer, here are 3 things that you absolutely need to know:

Create Your Support Network: While tittles vary, it is important to consider resources like The Director of Disabilities Services and Support, The Director of Health Services, The Dean of Students, Your class dean or academic advisor, your favorite professor, the Office of Student Services. Staff members in these offices will be poised to assist and support you. It is important to reach out to the The Director of Disabilities Services and Support early since accommodations that you may be entitled to (ex. extra time on an exam, housing preferences, transportation needs) cannot be granted retroactively. It might be a bit difficult to secure an appointment early on but do not give up. These folks will want to help you! Advocate and help them to get to know you.

You can complete your degree: While your diagnosis and treatment plan may alter your timeline, you can complete your degree. Do your best to be open to a reduced course load, taking time off and securing accommodations to support you while on campus. It may take time to be willing and open to making a change in your academic plan. Keep your eye on the prize and trust that although your plan may need to change, there are creative options that will allow you to earn your degree.

Create a Balance: Don’t forget to continue to engage in all that you love. If you were part of a team but can’t compete at the time of your diagnosis, maybe you can help manage it to continue to be involved. If you sang acapella or attended Student Government meetings, continue to as your treatment plan and energy allow. Do your best to let others in (as you feel comfortable) while engaging in a realistic curricular and co-curricular plan that makes sense for you.

Please feel free to contact me at MicheleRosenthal@Verizon.net if you need support and assistance to navigate and carve out a path for your unique journey.

Michele Rosenthal is a member of Triage Cancer’s Speakers Bureau and an educational consultant who has helped countless young adults with cancer identify appropriate on-campus resources and develop realistic plans for their unique circumstances.  She is currently the Assistant Dean, Undergraduate Programs, Sawyer Business School, Suffolk University.