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When diagnosed with cancer, you hear many different medical terms. At first these terms seem like alphabet soup or a long-ago algebra problem. Navigating the world of cancer care and its terminology is a daunting task for anyone.

Heath literacy is defined as obtaining, communicating, processing and understanding health information and services to make appropriate health decisions. A person who has trouble finding and utilizing the correct health information that they need has limited health literacy. This is a crucial skill for people to have in order to understand and cope with a cancer diagnosis and their treatment options.

The Cancer Support Community recognized the Supreme Court’s decision to uphold the tenets of the Affordable Care Act and, in particular, felt that insurance provisions of the law such as removal of lifetime caps, the removal of pre-existing condition discrimination and the option for dependents to stay on their parents’ health plans until the age of 26 would be of benefit for the cancer community. CSC was quick to point out that the important work would, in fact, be in the details of implementation of the law.

In recent years the number of drugs that are in short supply has been increasing, including drugs used to treat cancer. Most of these shortages are for drugs that are injected, or given intravenously. Some of these shortages are short-term and are caused by problems with shipping and ordering. Sometimes these shortages last longer. This is especially true when the shortage is caused by problems in the manufacturing of the drugs. If you have been diagnosed with cancer and are getting chemotherapy as part of your treatment, it is understandable that you would be concerned about a possible drug shortage.

I lost my mother to cancer just a month after I turned 24. Following her diagnosis of stage 4 esophageal cancer, she braved through more than two years of aggressive chemotherapy, radiation and surgery.

Losing people you love to cancer is of course tremendous to bear. Ask anyone who has experienced it—what’s said will likely bring you to tears. Stories of dashed hopes, of unanswered prayers, of lost time could shake your faith to the core. They knell of unavoidable pain as well as of our own fragility.

The good news in recent years is that there are more and more types of treatment for many kinds of cancer. No longer does “one size fit all” when you are making a decision about the type of treatment you’ll receive. More good news is that increasingly people are making these decisions jointly with their health care team as a part of shared decision making.

The challenge is that having to make these complicated treatment decisions can leave people feeling overwhelmed and confused. This is because for many people there is more than one treatment choice, and each of these choices has advantages and disadvantages.

During a public meeting at the Food and Drug Administration (FDA) last month, a lung cancer survivor shared her experience. When she was diagnosed years ago, the first thing her doctor said to her was, “How should we begin your smoking cessation program?”

The woman had never even been a smoker—just like one out of every five people living with lung cancer.

She then pointed out that even if she had been, 60% of people diagnosed with lung cancer have already quit smoking, and many long-time smokers became addicted when they were just teens—and for many, that was before government warnings and stricter laws on advertising

If sharing your cancer journey could enhance the lives of others, would you help?

I keep hearing that people who have been diagnosed with cancer want to give back. They want to “pay it forward” so that the next person who is diagnosed with their disease will have a better experience than they had. I always think to myself – how selfless! We want to give back to you, too.

There seems to be so much survey research these days. An organization asks you to answer a questionnaire and then you never hear about it again. We wanted the Cancer Experience Registry to be so much more than a survey, so we created something we call Explore Responses where you can do just that – explore the responses of other people who have been diagnosed with cancer.

Today the threat of skin cancer does not usually cross young peoples’ minds when they grab their towels and skip the sunscreen to lie out in the sun to get bronze skin. It is normal and very common to bring up in conversation one’s tan, and it is a compliment to hear, “Wow, you look so dark!” As a college student, I know that a nice tan is an expectation of young people during the summer months.

The media and pop culture often glamorize tan skin, encouraging young people to attain a luminous glow. However, skin cancer is a very real danger to my generation. The most aggressive form of skin cancer is melanoma. It develops when skin cells are damaged and mutate, which causes rapid skin cell growth. It is usually pigmented (typically brown or black) and can be seen on the skin. It is estimated that in 2013, 76,690 new cases of invasive melanoma will be diagnosed. Melanoma is also the most common form of cancer in young adults ages 25-29.

The launch of the Cancer Support Community’s Multiple Myeloma Cancer Experience Registry is a huge step forward for all of us that have been afflicted with MM.

Thank you! Thank you! CSC and the entire team that has spent months of time developing this registry on our behalf!