Veronica’s story

Today’s guest blogger is Veronica Backes, a 20 year cancer survivor who shared her inspirational story with the Cancer Support Community through the website. If you would like to share your own story or experience, click here. Read Veronica’s story below.

I just celebrated my 20th anniversary of being cancer free! I want to share my story because when I was in treatment I wanted to know someone who had survived cancer for a long time. Five years is an earmark, but twenty is amazing.

I was diagnosed with stage 3B breast cancer and had 19 malignant nodes. At the time, my prognosis was very poor with an 80 percent chance of recurrence in a year, even with treatment. I was 48 years old with a ten year old daughter still at home, so death was not an option for me. My husband and I aggressively sought treatment. I called the National Institute of Health (NIH) in Washington D.C. to ask about experimental programs for my cancer, and they referred me to Moffitt Cancer Center near my home in Tampa, FL. My current doctor would not refer me to the program as he thought it was too dangerous. I made the appointment myself, and when I went to see Dr. Goldstein at the bone marrow clinic he said no one had ever done that. I was only two weeks post mastectomy—the earliest patient he ever had.

I was accepted into the program and had four months of chemotherapy, six weeks of radiation. Then I entered into a high dose chemo treatment for five days that nearly killed all the cells in my body, causing me to require an adult stem cell transplant. I was in isolation for seven weeks and suffered a complication which caused a brain bleed. I made it through that after spending a month near the hospital until I was able to return home. Then, I had shingles the month after going home, requiring an IV of anti-viral medication.

Ever since then, I have been cancer free! I have not had any late term effects, and am very grateful I had the chance to cheat death.

My advice to anyone seeking treatment for cancer is to find a cancer center specializing in your specific cancer. Seek the most aggressive treatment you can. And most of all, stay positive. I was lucky to have a lot of emotional support from my husband, family and friends, as well as a deep spiritual belief in prayers.

I feel I beat cancer despite knowing I am still a candidate for recurrence. I have had a “live for the day” life for 20 years. I have gotten the chance to see my five children grow up, get married and give me nine grandchildren—something I thought I would be deprived of seeing. I am so grateful for that gift.

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What exactly is a registry, anyway?

The Cancer Experience Registry serves a vital role in helping researchers better understand the cancer journey, but what exactly is the Cancer Experience Registry?

Generally, a medical registry is a system for collecting, organizing and analyzing the experiences of individuals who have a certain disease, a condition that predisposes them to a health-related issue or prior exposure to substances that have been shown to cause an adverse health effect. Registries can be helpful in a number of ways by providing information such as the magnitude of the issue at hand, the incidence of a certain disease, the trends a certain disease faces over time or an assessment of the services available for individuals with the disease or condition. All of this information allows researchers to compile, analyze, and report the real experiences of individuals living with a certain disease or condition.

The Cancer Experience Registry, an initiative started by the Cancer Support Community, seeks to collect information about the emotional and social effects of living with a cancer diagnosis. Although other cancer registries exist, CSC’s Cancer Experience Registry is the first to focus on the self-reported emotional and social effects of a cancer diagnosis. In this regard, it meets a need that has been overlooked in the past and provides valuable insight into how individuals diagnosed with cancer can be treated and supported more effectively.

The Cancer Experience Registry seeks to address these issues through its three main goals, which are:

  1. To support greater understanding of the social and emotional needs of people who have been impacted by cancer
  2. To raise awareness among the research community, health care providers, patient advocates and policy makers around gaps in care and the social and emotional challenges of people affected by cancer
  3. To develop programs and services that will address the emotional and social needs and ultimately improve the long-term quality of life of people impacted by cancer

Since its inception, participation in the Cancer Experience Registry has been consistently growing, with more than 6,000 members to date. The survey is done completely online and usually takes between 20 to 45 minutes. Anyone who has been diagnosed with cancer at any point in their lives is eligible to participate in the on-going research.

The information gained from the registry will continue to allow many advances in the area of cancer support. For example, the Cancer Support Community developed Open to Options, a program that helps individuals diagnosed with cancer prepare for appointments in which they are making a treatment decision, with information gained from the registry in mind. Early findings from the registry also influenced the development of CancerSupportSource, the first web-based comprehensive distress screening program for community-based hospital, physician practices and advocacy organizations to streamline everything from screening to referral to follow-up care through one program. Further, registry data has set the stage for many health care providers to improve how they communicate with their patients and how to better address emotional and social issues that have previously not been the focus of care.

If you or someone you know is interested in participating in the Cancer Experience Registry, or if you want more information about the registry, click here.

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Lynch syndrome and cancer

March is colon cancer awareness month. Colon or colorectal cancer is the third most common cancer among men and women in the United States. It is estimated that over 135,000 new cases are diagnosed each year. A colorectal cancer diagnosis, like all cancer diagnoses, can bring up many emotions. If you or your loved one has been recently diagnosed with colorectal cancer you might be wondering, How could this happen? Does this mean other family members have an increased risk of developing colorectal cancer too?

There are several factors that might place you at a higher risk of developing colorectal cancer. Some of which include, being over the age of 50, smoking, obesity, high alcohol consumption, and/or a diet rich in red or processed meats. Another risk factor is genetics.

Up to 5% of colorectal cancers are attributed to an inherited disorder known as Lynch syndrome. If you have a family history of colorectal, endometrial (uterine), ovarian, or stomach cancer, it may be helpful to talk to your doctor about genetic counseling. A genetic counselor will help you determine if you or other family members should consider genetic testing for Lynch syndrome. This condition increases your risk of getting not just colorectal cancer, but also the other types of cancers listed above.

Deciding to find out if you have a genetic mutation, which makes you more susceptible to certain types of cancer, can be frightening. But remember, this mutation does not always mean that you will develop cancer. Nevertheless, being aware of such a mutation could help you make more informed decisions about medical treatment. With this information, and together with your doctor, you can develop a plan to increase your chances of early detection.

For more information on Lynch syndrome check out the Cancer Support Community’s Frankly Speaking About Cancer: Lynch Syndrome fact sheet.

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Americans left behind by health reform

In order to expand access to health care to all Americans, the Affordable Care Act (ACA) attempted to expand Medicaid eligibility in all U.S. states.  The federal government is obligated to pay 100% of the cost of the Medicaid expansion for 3 years, and at least 90% of total costs thereafter (Medicaid is funded jointly by states and the federal government).

However, after the law passed, some states sued the government, arguing that the Medicaid expansion was an overreach of federal powers and would greatly raise their state’s Medicaid costs.  In June 2012 the Supreme Court ruled that each state could decide whether or not to expand their Medicaid program and access the additional federal funds.

So far only 25 states and Washington, DC have decided to expand Medicaid.  The Medicaid eligibility guidelines for children, parents and childless adults varies greatly from state to state.  As a result, a large number of consumers will find themselves in a “coverage gap” in states that do not expand Medicaid.

Approximately 5-8 million people in these states will fall into the coverage gap because their incomes are too high to qualify for their state’s Medicaid program, but are below the poverty level and therefore do not qualify for subsidies to buy insurance on the marketplaces.  Therefore, these people will likely remain uninsured and unable to access affordable health care.  (See reports from the Kaiser Family Foundation, Urban Institute, and the New York Times for more information).

Only four of the states that have chosen to not expand Medicaid cover parents up to 100% poverty level and therefore their residents won’t be caught in the “coverage gap.”  In some states eligibility is limited to those making less than 20% of the poverty level (less than $3,000 per year).  There remains little coverage for adults without children in the states not expanding Medicaid.

For people who are uninsured and have cancer or a history of cancer, having access to health insurance is critical.  CSC will be monitoring the impact of Medicaid expansion on people with cancer, and encourages you to visit Coverage Counts to learn more and find out what you can do to support efforts to expand Medicaid access.

If you have cancer, and are shopping for new insurance coverage, please share your story by emailing us at: policy@cancersupportcommunity.org

If you have cancer, a history of cancer, or are at risk for cancer and will be shopping for health insurance on your state’s marketplace, please use the Cancer Insurance Checklist, which will help you choose the best plan for you.

And as always, if you have concerns regarding your own cancer journey, you are encouraged to call CSC’s Cancer Support Helpline at 1-888-793-9355. We are ready to answer your call.

Posted in Cancer Advocacy, Cancer Policy Institute | Leave a comment

Administration preserves patient access to certain medications

On March 6, 2014 the Cancer Policy Institute at the Cancer Support Community (CSC) submitted a letter to the Centers for Medicare & Medicaid Services (CMS) raising concerns about how a proposed change in policy could hinder cancer patients’ access to certain types of medication.  In response to the concerns of CSC and many members of the patient advocacy community, on March 10, 2014, CMS announced that they have withdrawn their proposed changes.

Under current law, CMS identifies six categories of medications as “protected classes”.  Medicare beneficiaries who take medicine to treat their cancer, have medical conditions which require them to take anti-seizure medicine, are HIV-positive, need to take immunosuppressant drugs or have a mental health condition for which they are prescribed antidepressants or antipsychotics are all guaranteed coverage for any of these medicines.  CMS had proposed to remove protected class status for three of these classes of drugs – immunosuppressant drugs, antidepressants and antipsychotics.  CSC and other patient advocates wrote to CMS to share their concerns that if this policy was instituted, patients may experience increased burden, uncertainty and delays in treatment if they couldn’t easily access the drugs prescribed by their physician.

As a nonprofit organization that provides direct services, research and works to improve the quality of care patients with cancer receive, CSC focuses on the importance of treating both the mind and body in order to improve patient outcomes.  Up to half of all patients with cancer experience distress, approximately 15-25% experience depression and about 16% are prescribed an antidepressant.  Furthermore, data from CSC’s Research and Training Institute shows the leading cause of distress for those living with cancer is a disruption to a patient’s work or family life routine.  CSC was concerned that the proposed regulation could have interfered with patient access to certain kinds of medication and negatively impact people with cancer.

CSC thanks CMS for not changing its current policy and thereby preserving Medicare beneficiaries’ full access to these special categories of medicines—people with cancer and other complex medical conditions need seamless access to life-saving and life-stabilizing prescription drugs.  The full comment letter, in addition to other cancer coalition letters supported by CSC can be found by clicking here.

If you have questions or concerns regarding your own cancer journey, please call CSC’s Cancer Support Helpline at 1-888-793-9355. We are ready to answer your call and assist you with any cancer-related issues.

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