New CSC tools designed to help people with metastatic skin cancers

Whether it’s a quick beach getaway to escape the snow or an upcoming spring break, long gone are the days of basking in the sun without a care. As science and epidemiology have evolved, we are now all too aware of the sun’s harmful rays and the damage it can do, especially among people with light-colored skin. But the truth is that no one is truly immune. Skin cancer accounts for half of all cancers in the U.S. Although the vast majority are due to exposure to the sun or ultraviolet radiation (for example, tanning beds), there are other causes as well.

Most skin cancers are found early and can be cured. But skin cancer can spread to other organs or distant tissues. Once the cancer has spread or metastasized, it’s a different story.

Of all skin cancer, melanoma is the most likely to become metastatic and, until recently, the picture was fairly grim. But, with several recently approved drugs – the first new treatments in over a decade – it means some people with metastatic melanoma are living longer and better than ever.

“We are in a sense rewriting history and changing the way advanced melanoma is treated because of improved survival and outcomes in some patients on newer treatments,” says Dr. Tara Gangadhar, Abramson Cancer Center of the University of Pennsylvania.

Although new treatments are advancing quickly, nothing is a home run yet. Experts and advocates say it’s critical to find a doctor who specializes in a person’s specific skin cancer. Clinical trials, which test new treatments or a combination of treatments, may be an option for many people, especially those with metastatic disease, so it’s important to learn about all of the treatment options before deciding what the right path is for you. Some treatments can make someone ineligible to participate in a study.

Of course, each person living with Stage IV melanoma or other skin cancer has his/her own story, and may respond differently to various types of treatment. Still, people with metastatic disease often share similar concerns. For example, they typically:

  • Worry about how treatments will affect them, their families and their ability to fulfill their roles at home and work
  • Need greater emotional and spiritual support
  • Face hardships when it comes to paying for care or securing disability or life insurance
  • Are fearful about what the diagnosis means and if the recommended treatment will actually work

It’s easy to become overwhelmed. But there is help and support.

The Cancer Support Community is launching new resources to give patients and caregivers access to credible, evidence-based, medically reviewed information and resources about metastatic melanoma and advanced basal cell carcinoma – two very different skin cancers. Frankly Speaking About Cancer: Advanced Skin Cancers includes up-to-date online content, advice from others, fact sheets and resources. It reviews the latest treatment options, possible side effects, questions to ask your health team and things they need to know throughout your care, as well as steps you might consider to better cope with the disease. To order a free fact sheet about metastatic melanoma or advanced basal cell carcinoma, or to find out more, visit https://orders.cancersupportcommunity.org/.

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Announcing Cancer Insurance Checklist: Guía de Cobertura Médica para Personas con Cáncer

As implementation of the health reform law (the Affordable Care Act) continues, the Cancer Support Community (CSC) is pleased to announce the launch of a Spanish language version of the successful resource, the Cancer Insurance Checklist. This easy-to-use guide is available to assist people with cancer, a history of cancer or at risk for cancer choose a health insurance plan.

The need is great.  Nearly a third (31.1%) of Hispanics and Latinos under age 65 in the United States do not have health insurance, as reported by the Centers for Disease Control and Prevention (CDC). According to the U.S. Department of Health and Human Services, 10.2 million Hispanics and Latinos are eligible for coverage through the health insurance marketplaces, 3.7 million of whom speak Spanish as their primary language.

Cancer Insurance Checklist: Guía de Cobertura Médica para Personas con Cáncer was designed to provide guidance for people who prefer resources in Spanish as they consider their needs and options for health insurance. The deadline to register and purchase coverage through the marketplaces for 2014 is March 31, 2014.

Available at SegurosMedicosYCancer.org, Cancer Insurance Checklist: Guía de Cobertura Médica para Personas con Cáncer is a useful Spanish language guide to help you find a health insurance plan that will meet your needs. The Checklist walks you through the process of evaluating and comparing plans’ coverage for cancer-related services and the costs associated with that coverage.

WHEN TO USE THE CHECKLIST:

  • If you will be purchasing insurance on your state’s health insurance marketplace
  • If you have cancer, a history of cancer, or are at risk for cancer
  • When evaluating insurance plans
  • When discussing your insurance needs with your navigator or marketplace representative
  • When discussing your cancer care needs with your health care provider

Simply fill in the three worksheets for each insurance plan you are considering. By doing so, you will be able to tell which insurance plan best fits your needs and your budget.

The Cancer Insurance Checklist and Cancer Insurance Checklist: Guía de Cobertura Médica para Personas con Cáncer were developed through a partnership of 19 cancer and advocacy organizations led by the Cancer Support Community.

SegurosMedicosYCancer.org also provides helpful links to other Spanish-language resources related to cancer and insurance.

We urge you to use and share this helpful new tool with anyone who may need it. And if you need any assistance with cancer related issues, please call CSC’s Helpline at 1-888-793-9355, which offers support services in English and Spanish.

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Parenting with cancer

A cancer diagnosis can be the beginning of a new, difficult journey. Those with cancer must deal with a wide range of new issues, from treatment to the effects the diagnosis has on their children. An often overlooked group that is greatly affected by cancer is the children of individuals with cancer. Children facing a parent’s diagnosis can often feel out of place, as it may be difficult for them to relate to other children who are not going through the same issues at home. More than 3 million children currently have a parent diagnosed with cancer, and it is important to address their specific emotional needs.

For individuals facing a cancer diagnosis, it is important to keep the lines of communication open with their children. Although these conversations will differ based on the ages of the children, it can be helpful for parents to be clear with the basic facts of their diagnosis. Although the diagnosis may be difficult to accept, providing this information to children will allow them to not think the worst about the situation and calm some worries they may have after originally hearing about the diagnosis. Some important facts to include in this conversation are the type of cancer, where the cancer is in the body, what treatment with entail, and how treatment will change both the parent’s life and the child’s life. It can also be helpful to tell your children about times you know you will be in the hospital, as well as making it clear that there will always be someone to care for them even if you yourself are unable to due to a hospital stay.

During treatment, it can be helpful to maintain the same rules and boundaries in the household as prior to the diagnosis. Some children may grow distant because they do not want to burden their parents with their emotional concerns when they know that they are already dealing with a lot. Others may act out to express their anger or gain attention from others. Keeping up with the same rules can help maintain the routines that were in place previous to the diagnosis and indicate to the children that they still live in a safe environment where they can feel comfortable to appropriately express their concerns.

It can also be helpful to provide a time each day for your children to ask any questions that are on their mind. This could be built into an existing routine, such as having this time prior to tucking them in for bed. Many children have heard myths about cancer that may have them fearing the worst. This time can help them relieve their worry and have any confusing aspects of treatment explained to them again.

Parenting with cancer can be intimidating and overwhelming. It can be difficult to focus on your children while simultaneously dealing with the treatment process and giving attention to your own wellbeing. However, it is also important to remember that it is a process. There will be ups and downs in the journey, but it takes an immense amount of strength to care for your children while also dealing with your own treatment. For support regarding parenting with cancer, as well as other issues related to a cancer diagnosis, call the Cancer Support Helpline, Monday-Friday 9 a.m.-8 p.m. ET at 888-793-9355.

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Common emotional concerns for people impacted by cancer

Hearing the word “cancer” from a doctor often unleashes a flood of emotions, concerns and fears that can be difficult to process and manage. In addition to worrying about managing your physical symptoms, cancer can often cause emotional symptoms that you weren’t as prepared for. Some of the common emotional concerns that people living with cancer are faced with include learning how to manage stressful situations, fears about the future, and how your family and friends will handle the news.   At the Cancer Support Community we assure you you’re not alone in your fears, and there are ways you can manage your emotional well-being so you can live well with cancer.

Managing stress
The study of psychoneuroimmunology studies the link between our mental health and physical health, and suggests that our thoughts, feelings and attitudes can have an impact on our overall health during and after cancer treatment. This link makes managing reactions to stressful situations especially important. There are several techniques you can use to counteract stress when you feel it starting to affect your wellbeing. Breathing exercises can help you relax and visualize what makes feel strong and healthy. Recalling positive emotions or life events through guided imagery can take your mind off what is causing you harmful stress.  Getting in touch with spirituality, whether through prayer, yoga, music or writing can also be comforting and ease the common feeling of being alone.  For more tips on ways to combat stress throughout your journey with cancer click here.  And if you’re feeling overwhelmed or having trouble managing your stress levels, call the Cancer Support Helpline at 1-888-793-9355, Mon-Fri 9 a.m.-8 p.m. ET.

Fears about the future
It’s not uncommon to worry about what the future will hold for you and your loved ones when you’re facing a serious diagnosis. However, if you feel that fears about the future are consuming your every thought, you may miss out on enjoying the things that normally bring you pleasure, such as time with family and friends. To cope with this uncertainty, reach out to family and friends, a faith leader or mental health professional about your concerns and ways to ease them. Your health team can also offer you peace of mind by giving you a better understanding of your diagnosis, or prescribe you with stress-reducing medication. Finally, living with cancer doesn’t mean you should stop planning for the future. Keep moving ahead one step at a time.

Worries about family, children and friends
A cancer diagnosis can change the way you relate to your family and friends, and the way they relate to you. Those closest to you may feel scared or overwhelmed with your diagnosis, and you may be worried they will pull away from you. To cope with these worries, be honest with your loved ones about what you’re feeling and what you need most from them. Be open with them, and ask them to do the same with you. It can be useful to put together a list of tasks you would like help with from family and friends. Attending a support group or sitting down with a cancer counselor as a group can also be beneficial in letting everyone express their worries and learn how to be there for one another during this difficult time.

It may seem sometimes like cancer produces an endless amount of fears and anxieties, but you don’t have to go through it alone. Talk to your loved ones and your healthcare team about any emotional stress you may have. And for additional support, check out CSC’s social and emotional support programs here, and check here for an affiliate near you.

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Finding inspiration in the wild

Steve is a guest blogger for the Cancer Support Community who shared his story on our website. If you have a story, experience or thought you would like to share with us click here.

Having survived 27 years with type 1 diabetes, triple bypass open heart surgery, two pancreas transplants and two cancer diagnoses, I feel very fortunate to be so healthy now. I have a transplanted pancreas producing insulin, and have achieved five years of remission.

This brings me to share an analogy on what is possible when we pursue our dreams, call upon our human spirit to rise above man’s most threatening diseases, and most importantly, are there for other human beings who are also faced with the demands of disease.

There are two animals who characterize what it is like to live with and beat life’s most dangerous diseases. One is the wild horned ram that lives in the deep canyons of Hawaii. The other is the masked Siberian husky. Each possesses a unique combination of qualities that help make it more likely to survive and thrive with when facing harsh demands.

The ram displays a rugged independence, and is able to stand alone against the harsh realities of the wilderness. The ram is determined to find a way that works for him. He is strong, can endure discomfort and always rise to the next level of rocks, brush and vegetation. Ultimately, he is a daring climber.

The Siberian husky is a quiet, self-reflective leader with a mask that distinguishes his bold face. He is tender, compassionate, free-spirited and optimistic. The husky’s special skill is his enormous endurance through a tundra that takes a toll on his body. The husky is more loyal than the ram and also shows more warmth.  The ram is a challenger with a feisty attitude.

As a result of knowing anything is possible, I cherish each and every day I’m alive. But an even more special and rewarding, is the joy of helping others who have medical needs, so they too can receive the same chances in life as I have. As each of us work together to accomplish this, it’s comforting to know that the spiritual qualities so eloquently expressed by the husky and the ram are in all of us.

-”HeartofSoul” Steve

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