Love your social workers: #31DaysofSW

Helping HandsPrimary care physicians, surgeons, oncologists, radiologists, nurses, oncology nurses…the list of people you can interact with during your cancer journey is seemingly endless—and it can change constantly. Each one of these professionals plays a different role in treating your cancer. But, add one more to the list, the oncology social worker—the person responsible for treating YOU.

A social worker seeks to improve the quality of life and well-being of individuals, families, couples, groups and communities through research, policy, community organizing, direct practice, crisis intervention and teaching.

For someone impacted by cancer, a social worker can make all the difference. Oncology social workers support patients and their loved ones in a myriad of ways, including providing available resources, information regarding medical and insurance coverage and tips for how to talk to your loved ones about your diagnosis. Oncology social workers often offer relaxation techniques to reduce anxiety, lead support groups and help identify areas of distress. They’re not just advocates for the patient, but for the whole family.

With 170 locations across the country and around the world, the Cancer Support Community is the largest employer of oncology mental health professionals, including many licensed social workers. At CSC we strive to ensure that cancer care is high-quality and patient-centered, and social workers are the core of this, as they focus on the whole patient in their every-day work.

All this month, CSC is saying a BIG thank you to our social workers for the unending support they provide to people impacted by cancer. Through our #31DaysofSW campaign on Twitter, you can read our daily tributes to our social workers, and this week you can learn more about some of them on our blog when we take you through a day in the life of 4 CSC social workers.

How have social workers changed your cancer journey? This month we are inviting you to share your story with us, and say a special thank you to your social worker by using the hashtag #31DaysofSW on our Facebook page and Twitter account. You can also share your story here.

For more resources, information about CSC’s programs and services and to speak to a licensed-mental health professional, please call the Cancer Support Helpline at 1-888-793-9355. The Helpline is available Monday through Friday, 9 a.m. to 9.p.m. ET.

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Healing—it takes a community

Today’s blog is from Judy Pearson. Judy has written nearly two decades worth of newspaper and magazine articles, and has published three books. In 2014, she was named one the most inspirational women in Chicago. A triple-negative breast cancer survivor, she is the co-founder of the Women Survivors Alliance, and the editor of NOU Magazine.

Judy WSA headshot

Being a long time freelance writer and published author, research and writing were important to me as I traveled my breast cancer journey four years ago. “Cancer University” has taught me a great deal about life, as you’ll soon see.

For centuries, a typical day for the men and older boys of Israel’s Negev Desert Bedouins consisted of herding and farming and other manly pursuits. And as soon as the men left each morning, the women and girls pulled up the sides of their living tents and went about their chores. They laundered together, cooked together and oversaw their children together. Most importantly, they learned from one another.  Elder to younger, experienced to inexperienced, the women shared their knowledge and life’s stories.

In the 1960’s, in an effort to better the Bedouins’ lives, the Israeli government began moving them from their tents into government-created towns and houses. The men’s lives continued as they had, but the women’s lives vastly changed. They found themselves isolated by their houses’ walls. The communal style with which they were familiar and upon which they relied, had completely evaporated.

Then, the government created community centers in the housing settlements for the women to make and sell their crafts on the open market. However, these centers added something entirely unforeseen. The women were once again in a communal setting where learning and sharing could be passed from one to another. The centers became the heartbeat of life and empowerment for the Bedouin women.

Yes, this little story has nothing to do with cancer. But it makes a very important point: women are communal creatures. And that’s never more important than when we are healing.

As medicine and science recognize more and more, men’s and women’s bodies behave differently with respect to diseases and treatments. And why wouldn’t they? Our bodies are fueled by different hormones, and those little guys (and girls) make all the difference.

A woman’s communal instinct has a great deal to do with the neuro-hormone oxytocin—secreted in both men and women as a response to stress (and healing from cancer is stressful, right?). Oxytocin reduces stress and enhances affiliation. Here’s the kicker: male hormones reduce the effect of oxytocin. But estrogen amplifies it.

Communing has been the topic of myriad studies as well. Shelley E. Taylor, author of The Tending Instinct, talks about women “befriending” one another. Under stress, Taylor says, the desire to be with others is much greater among females than among males. We girls crave networks that provide us with resources and protection.

In The New Feminine Brain, Mona Lisa Schultz and Christiane Northrup discuss that many women find biological comfort in one another’s company. Language is the glue that connects one female to another. No surprise since we know that women, on average, talk and listen a lot more than men.

No wonder so many cancer support groups are begun by women! I know from personal experience that cancer can be very isolating. Even encircled by loving family and friends, there is great need to also be with others who “get it.” The type of cancer doesn’t matter, but clearly gender does.

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A crowd enjoying last year’s SURVIVORville event. Don’t miss this year’s event, June 5-7, 2015.

My co-founder and I created the Women Survivors Alliance because we couldn’t find anything else like it for ourselves. We bring women together for education, inspiration and motivation in three ways:

  • www.SURVIVORville.org – an annual event, held in Nashville, with Cancer Support Community as an important partner. This year’s can’t-miss event is June 5 – 7. Click the link above to register.
  • www.NOUMagazine.org – our free, online magazine, with articles covering nutrition, exercise, intimacy, finance and more.
  •  www.Survivors2ndAct.org – recognizing that helping is healing, this platform welcomes essays from women around the world, sharing how they’re using their gifts of time and experience to give back to society for the greater good.

So ladies, here are the take home lessons:

  1. Get as much information as you can—from the internet, your health care team and others who have gone down the same road as you. Useful information comes in all shapes and sizes, from all walks of life!
  2. Find support groups in your area and try them out. Like the perfect pair of shoes, if one doesn’t fit, try another.
  3. Start your own group with one or more like-minded survivors. You’ll be amazed how many other women have the same needs you do.

I promise you will travel the healing path much more easily – regardless of how long it has been since you heard the words, “You have cancer” – in the company of others.

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Gratitude for Cancer?

This week’s blog post is a guest blog post by Marcia Donziger, Founder and Chief Mission Officer of MyLifeLine.org Cancer Foundation

Marcia

As a woman diagnosed at the age of 27 with Stage IIIc ovarian cancer, I went through a dark time.  According the stats, only 22% of women live another 10 years.  Although I can’t remember what I had for breakfast yesterday, I do remember the smallest details of my Diagnosis Day (D-Day).

It was March 1997 when I was living the “normal” life of a 27-year old – newly married, just bought a house, working full-time, and traveling.  That’s when I started feeling some vague symptoms like bloating and abdominal discomfort.

I asked my doctor for antibiotics assuming I had a bladder infection.  Never in a million years would I have guessed a grapefruit-sized tumor was growing on my left ovary.

“Could it be cancer?” I asked.

“No,” my doctor said confidently. “You’re too young to have cancer.”

On March 31, 1997, I was wheeled into the pre-op room on a gurney and started on an IV.  That’s when the medical assistant came in with a clipboard.

“Sign at the bottom,” he yawned, apparently bored.  I squinted to read the small print.  “I consent it is possible…. to die…or have a hysterectomy…”

I looked up at the assistant in a panic.  DIE?  HYSTERECTOMY?  Sure, I knew there was risk in surgery to remove a benign tumor, but I hadn’t considered the possibility of a hysterectomy or death.

My doctor had told me verbatim, “You’ll be back to work in a week.” These risks were never discussed.

After five hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing around the gurney in pain.  I still felt as if knives were stabbing through my belly and back.

The doctor was hovering over me and matter-of-factly said, “I’m sorry.  You have ovarian cancer.  You’ve had a complete hysterectomy.”

So I lived.  But the other worst-case scenario happened, and I was devastated.  What I heard loud and clear was, “Cancer. You. Can’t. Have. Children.”

My New Normal:  Ovarian Cancer spread throughout my abdomen and lymph nodes resulted in a hysterectomy.  Infertility meant experiencing intense grief and loss for the future I had dreamed of.  Six months of chemotherapy meant an endurance game of illness, and if I was lucky, recovery.

Halfway through chemo treatments, I celebrated my 28th birthday.  But there wasn’t a lot to celebrate.  My marriage was crumbling.  Cancer puts tremendous stress on a couple.  Some couples can handle it together like champs.  We didn’t.  We divorced one year from the date of my diagnosis.

There I was – age 28, ravaged physically and emotionally, divorced, and dreading life in the single world, as a cancer survivor without the ability to have children.  But that’s a topic for another blog.

Today I am the proud mother of twin boys – now age 8 – who were born with the help of an egg donor and surrogate mom, Katrese.  She and I became fast friends during the pregnancy, which was very healing for me.  She was even one of the founding board members of MyLifeLine.org.

Today, I feel grateful.  Grateful for that traumatic day the C-Word crashed into my life and burned up the future I’d planned.

Today, I get to rebuild my future and help MyLifeLine.org grow as the Chief Mission Officer and be an advocate on behalf of survivors and the people who love them.

Today, I get to be a Mom to 2 incredible children.

Yes, that’s right.  Today, I am grateful for the ovarian cancer diagnosis that turned my life upside down and caused me to go down a new, uncharted path.

Today, I am confident there is beauty beyond the pain and the fear.

Today, I ask you, what are you grateful for?

About MyLifeLine.org

The mission of MyLifeLine.org is to empower cancer patients and caregivers to build an online support community through free, personalized websites. MyLifeLine.org is the only personal website service that consolidates all community communication needs in one place, while focusing 100% on people affected by cancer. Research shows that increased social support during a cancer diagnosis can improve outcomes. Every day, MyLifeLine.org provides free, personal and private websites to patients and caregivers to help them easily connect with family and friends, because every cancer patient should feel supported. To learn more, visit MyLifeLine.org and check out the MyLifeLine.org blog.

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Preventing cancer—it’s in the numbers

Today’s guest blog, in honor of National Cancer Prevention Month, is by Jeanne Ellinport, Managing Director of External Affairs for the Prevent Cancer Foundation.

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As we honor Cancer Prevention Month, I want to highlight some of the vast differences in cancer statistics across the world since we all know that cancer knows no boundaries.

Cancer is a disease that affects virtually everyone in some way. It disrupts our lives and in many cases, takes them too soon. It strikes unexpectedly and devastates men and women, young and old, people of every race, ethnicity and creed. It is blind to political affiliations, socioeconomic levels and geographic location.

In 2012, there were 14 million cancer cases worldwide. Approximately 8.2 million people—nearly equal to the entire population of Austria—died from the disease that year. Cancer is the second leading cause of death in the United States, responsible for an average of 1,580 deaths daily. That number is just too high.

Prevention and early detection are the most important keys to the future health and wellbeing of individuals and families around the world. SinceFebruary is Cancer Prevention month, it is not only a time to reflect on the progress we have made in the fight against this disease, but also to take bold steps toward dramatically decreasing the number of lives impacted by a cancer diagnosis.

Although these statistics are currently our reality, they simply don’t have to be. Only about five to ten percent of cancers have a strong hereditary link, and the World Health Organization states that cancer is avoidable to a large extent.  With the knowledge we have right now, up to 60%of cancer cases and more than 50%of cancer deaths can be prevented.

Cancer prevention can be realized, in many cases, through healthy lifestyle changes such as refraining from the use of tobacco products, maintaining a healthy weight, exercising regularly, eating a nutritious diet, practicing sun safety, receiving recommended screenings and immunizations, practicing safe sex and knowing family medical history. We recognize this is easier said than done, but we’ve seen the efforts work.

Nearly 18%of Americans use tobacco products, and one person dies every six seconds from a tobacco-related disease in this country.  Currently, 5.4 million people around the world die each year due to tobacco-related illnesses, and that figure is expected to soar to 8 million by 2030.

Obesity is poised to surpass tobacco as the leading cause of cancer within a few years. In 2014, more than 1.9 billion adults were overweight, 600 million of whom were obese. Most people in the world now live in countries where more deaths are caused by obesity than malnourishment or starvation. Projections are dire for underserved populations and those living in poverty, those with lower education levels and those who are uninsured.

Infectious agents are responsible for almost 22%of cancer deaths in the developing world and six percent in industrialized nations. Human Papillomavirus (HPV) causes cervical cancer, a highly preventable form of the disease, yet ravages the lives of young women who have no access to immunization, screening or treatment, particularly in low- and middle-income countries. With HPV vaccines now easily available, we must educate parents about this important cancer vaccine for both boys and girls. We have an opportunity to significantly reduce cervical, head and neck, anal and many other forms of cancer.

Cancer prevention has the potential to save millions of lives and it also makes compelling economic sense. In 2010, the cost of cancer care worldwide was $1.16 trillion, not including long-term care costs for patients and their families. Research shows that prevention efforts can save 4.5 million lives and almost $600 billion over the next 25 years in the U.S. alone, yet only three pennies of each health care dollar go toward prevention. Truly penny-wise and dollar-foolish.

Historically, the U.S. has been a leader in the fight against cancer, yet we are at risk of falling behind other countries because of competing policy and fiscal priorities. We need to invest in our health care and biomedical research infrastructure if we want to build on the progress we’ve already made and unlock the answers to our deadliest questions. I ask you to join together to advocate for increased funding in cancer prevention research and to promote and protect prevention strategies

Cancer crosses social, political, and geographic lines, but so does the force of change when we work together.  Let’s work together to make cancer history for generations to come.

About Prevent Cancer Foundation:
The mission of the Prevent Cancer Foundation is saving lives through cancer prevention and early detection. Their vision is to Stop Cancer Before It Starts!

The Prevent Cancer Foundation advocates and supports the prevention and early detection of cancer through Research, Education, Advocacy and Community Outreach. To learn more, visit http://preventcancer.org/.

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Pink, black and white: the real color of breast cancer

racial disparity blog imageWhen it comes to living with breast cancer, there are no shades of gray; black women are significantly more likely to die from breast cancer than white women. Though February is nationally recognized as our Black History Month, the racial disparity that still exists in our health care systems proves that total equality is still an ongoing goal for the future.

In 2014, the Sinai Urban Health Institute and the Avon Foundation for Women conducted a study of the death rates of white and black women due to breast cancer in 50 of the nation’s largest cities over a period of 20 years. The results were striking:

  • Though white women are more likely to be diagnosed with breast cancer, on average black women are 40% more likely to die from it.
  • The most lethal city is Memphis, TN where black women are more than twice as likely to succumb to the disease.
  • Cities with the highest disparity rates are cities where there are geographically separated medical centers that serve either primarily black or white patients (with little racial mixing).
  • The mortality rates were relatively even until 1995. After that, white women’s rates declined while black women’s rates stayed the same.

All of these startling figures beg the question why?Why did things change so drastically in 1995? Many researchers, including Dr. Whitman of the Sinai Urban Health institute, linked the decline in white women’s deaths with the rise of early detection practices like mammograms and clinical breast exams. These practices became more readily available to white women than black women, leaving them with fewer access opportunities and lower quality screening procedures where cancers were simply not detected.

Treatment cost is another major concern. The second highest indicator of racial disparity (behind the separated care centers for whites and blacks) was poverty. Cities with high percentages of people living under the poverty line were strongly correlated with a higher racial gap. For the women living in this state, of which the majority was black, it was their economic position which barred them from obtaining the same treatment options as white women.

Nobody, regardless of race, socioeconomic status or anything else, should be restricted from getting the help they need. That’s why CSC has dedicated so much time and so many resources into setting up channels for people to discuss their screening and treatment options. If you or someone you love is worried about their access to medical facilities, visit our Cost Information site to learn more about places to go for quality yet affordable screening, or check out our free Cost of Care eBook here. In addition, for questions specifically related to making a cancer treatment decision, CSC’s Open to Options is a service that looks at each case and customizes its approach on a person by person basis.

Cancer is enough of a battle without having to worry about substandard detection practices or the cost of health care, and we want to make sure that you receive the highest quality care possible.

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