Meeting the needs of cancer survivors

Today’s blog post is written by Marni Amsellem, PhD. Marni is a research consultant for the Cancer Support Community.

Group 16

Robert, Felicia and Earl at CSC Philadelphia
Photograph by Ed Cunicelli

Today is National Cancer Survivors Day. Cancer survivorship is often thought to begin on the day of diagnosis. While the term “survivor” can have different meanings—one thing is clear—the social and emotional needs of people who have ever had cancer are vast. Whether you’re newly diagnosed, in treatment, facing a recurrence or considered cured, cancer survivors have distinct needs, and these needs can change over time.

A huge part of what we do at the Cancer Support Community is help address the social and emotional needs of anyone who has ever received a cancer diagnosis. This is done in a number of ways, including our Frankly Speaking About Cancer workshops. These workshops are offered through our Affiliate Network and program partners. After each workshop, people fill out a short survey. Through these surveys, we learn more about the information and support needs of people affected by cancer.

Last year, 35.1% of workshop participants were diagnosed with cancer within the past year. Both the emotional and informational needs may be very high during this time. For example, women with metastatic breast cancer reported they attended a workshop focused on their diagnosis because they wanted to:

  • Learn about their diagnosis (85.3%)
  • Better cope with a cancer diagnosis (65.6%)
  • Learn more about treatment options (63.3%)
  • Get answers to specific questions (37.1%)

We also recognize that many people, even years after a cancer diagnosis, have questions, concerns or want to connect with others. Which is why 23.4% of workshop attendees were diagnosed five or more years ago. An important reason why these individuals came to a workshop was to connect with others who were going through similar issues.

Recognizing that people have different needs at different points, CSC created the Cancer Experience Registry. The Registry is an online, grassroots community where people can share their social and emotional experiences with cancer. It is a research project driven by anyone who has ever received a cancer diagnosis and their caregivers.

Our hope is through the sharing of these experiences, we can use this information to create new programs and resources for people touched by cancer, but also bring forward a collective patient and caregiver voice to health care providers, policymakers and others to help improve the cancer experience.

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Celebrating 20 years of Gilda’s Club: A message from founder Joanna Bull

Gilda RadnerHow wonderful it is to celebrate twenty years of Gilda’s Club being here for people with cancer and their families and friends! I vividly remember when Gene Wilder, Joel Siegel, Mandy Patinkin and I met in a huddle of determination to see that no one should ever feel alone while living with cancer.  We were devoted to the belief that the spirit of friendship and all things possible that Gilda Radner expressed in her book “It’s Always Something,” should and could be perpetuated with the club that we named for her. “An elite club I’d rather not belong to,” she told us, and it’s true: who would ask to belong? But we created a place where people living with cancer would feel entirely at ease at their home away from home, facing the unknowns that come with illness while being there for one another and creating a unique support community as they gave support and received it—together.

Nostalgia brings to mind the past, and I remember as I look at these twenty years, how it all came to pass. I was at a desert retreat in Southern California with a bunch of psychotherapists, health care workers, artists and spiritual seekers (quite a disparate group!) when I connected with a therapist who was putting together an innovative meeting place for people with cancer and looking for someone to run the “clinic” in this new, non-hospital group therapy setting. In those days, the late seventies, spiritual focus was a therapeutic alternative to the suffering of the world, so the fact that I had spent some time in a Zen monastery with Suzuki Roshi and was working on a degree in psychology instantly qualified me. I jumped into the deep end, into unknowns, into new ways, with no regrets.

CSC CEO Kim Thiboldeaux, Gilda's Club Founder Joanna Bull and CSC President Linda House

CSC CEO Kim Thiboldeaux, Gilda’s Club Founder Joanna Bull and CSC President Linda House

After twenty years during which we’ve made clear impact in the understanding of the importance of social and emotional support for illness, there is nothing more present now for me than a sense of privilege and gratitude. Privilege to have been a part of this movement, which has defined in prescient particulars what modern psycho-oncology tells us is what matters; and gratitude to be a part of it still, as consultant to Cancer Support Community, the outcome of a merger with Gilda’s Club that has led to this umbrella network of cancer support committed to social and emotional support as an integral part of cancer care.

As for gratitude, it’s not just inexpressibly meaningful to me the fact that thousands of people living with cancer – families and caring friends as well as those in treatment, now and chronically – continue to create after all these years support communities that they celebrate as they live with illness in the family or create family in their many local support communities. To me, it’s that the Gilda’s Club mission continues to thrive: that of caring for one another, utilizing its program of structuring what’s personally needed, extending the invitation to others who care, and respecting the wisdom of direct experience that makes being there for one another the deepest path of being alive together in adversity. It’s what we’re here for.

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National Cancer Survivor’s Day: What’s in a name?

Survivor's Day imageNational Cancer Survivors Day occurs the first Sunday of June every year to celebrate the 14.5 million cancer survivors in the U.S. today. That day is right around the corner on June 7!

A day that makes use of the word “survivor” to describe one’s experience with cancer brings up the discussion of verbiage in regards to cancer, particularly the use of battle language with phrases like “survivor” and “the fight against cancer”.

Different people who have experienced cancer have their own feelings on the words used to describe their experiences, and all of these feelings are important. There are people who identify as “cancer survivors” and those who are proud to consider their experiences a “battle with cancer”. However for others, these terms have become loaded phrases with implications and meanings that can do more harm than good.

Kate Granger, herself diagnosed with cancer, wrote this article denouncing the characterization of cancer as a fight or battle, even going so far as to reject being called brave.

“Bravely implies a choice,” explains Granger, “Someone who lays down their life to save another human being is brave. I didn’t choose to be affected by cancer and I don’t believe being placed on the courage pedestal helps me to continue living.”

Other members of the cancer community and some medical professionals have expressed similar opinions and addressed additional concerns with this language. These concerns include the connotation of portraying cancer patients in remission as “winners” or “survivors” in the face of the terminally ill and how it can make one feel like a failure. What’s more, considering people in remission or people living with cancer “survivors” and “winners” implies that those who have passed away from cancer are “failures” and “losers”. It can imply that they didn’t fight hard enough. That they gave up.

With this in mind, what are the implications of naming a day “National Cancer Survivors Day”? Are those who have passed away no longer to be remembered due to no longer being survivors? Are the terminally ill not to be honored due to their inevitable “failure” to survive?  No.

Survivorship is actually a strong and empowering concept for many.  The phrase was made popular by the National Coalition for Cancer Survivorship (NCCS) in 1986, when the organization decided to make an effort to replace the words “cancer victim” with “cancer survivor” as part of an effort to establish programs that would assist people on every part of the survivorship spectrum. This new phrase allowed many to see their time with cancer as an empowering experience, and for many that confidence may very well be the exact emotional support they need.

Fran Visco, president of the National Breast Cancer Coalition, has been quoted as saying that while there is contention over the use of the word “survivor”, there doesn’t necessarily seem to be an ideal alternative.

“Some want to adopt ‘women living with breast cancer,’ because there is no guarantee that the cancer will not recur,” says Visco, “Some even want to be called victims. But no one has yet come up with a better term.”

Different people who have lived with cancer have different opinions on the semantics of cancer, and those opinions all need to be considered. There are people living with cancer or who have lived with cancer who embrace the language and those who reject it. National Cancer Survivors day honors each and every person touched by cancer and each and every one of them deserves to have their voice heard.

No matter what words you use to describe your relationship with cancer, remember that your experience is important—and in fact, by sharing it you can give back to others. CSC’s Cancer Experience Registry is a unique community of people who have had a cancer diagnosis or have been cancer caregivers. This group is helping researchers to better understand the social, emotional, physical and financial impact of cancer by answering questions, offering tips and sharing support.

If you know someone who has ever been diagnosed with cancer or has been a caregiver, please invite them to join our Cancer Experience Registry by visiting www.cancerexperienceregistry.org. We are seeking to hear from as many people as possible so that we and others can create the best possible programs to fit the true needs of people touched  by cancer!

Happy Cancer Survivors Day to all who have been touched by cancer—and no matter what you call yourself, remember that no one has to face cancer alone!

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#ThankaNurse: A tribute from CSC’s Affiliate Network

view during chicago marathonIf any quote can sum up the role that nurses play during the cancer experience, it’s this one from Maya Angelou: “People will forget what you said. People will forget what you did, but people will never forget how you made them feel.” Throughout the month, CSC has been paid tribute to nurses in honor of Oncology Nursing Month. There are many special relationships with nurses throughout our Affiliate Network. One of these relationships is between our Affiliate, Gilda’s Club Chicago and Patrice A. Stephens, MSN, APN, ACON-BC. Read her story, submitted by Gilda’s Club Chicago below. 

Patrice began her work with breast cancer patients at Advocate Christ Medical Center nearly 35 years ago. In her first role as an oncology nurse and her current position as Breast Nurse Navigator, Patrice has touched the lives of tens of thousands of breast cancer patients and their families. Patrice provides extraordinary patient-centered care to the women she meets each day. Her approach to working with breast cancer patients expands beyond medical care. Patrice provides referrals for wigs, prosthesis, social support, counseling, and breast cancer networking groups in order to further assist her patients during their journey with breast cancer. She offers hope during difficult and uncertain times.

Patrice coordinates the community programs Look Good, Feel Better and Paint the Town Pink each year for Advocate Christ Medical Center. These programs reach hundreds of community members each year. After 35 years in the field, Patrice still greets every patient with a smile and a warm hello while sharing the latest breakthroughs in breast cancer treatment.

Patrice’s dedication to the field of oncology expands beyond her own position at Advocate Christ Medical Center. Patrice volunteers her time with Gilda’s Club Chicago at Advocate Christ Medical Center by co-facilitating a monthly Breast Cancer Networking Group and also providing lectures. In addition, she is a founding board member with March4Meg, a local organization that provides support to melanoma patients and their families.

Have you thanked your favorite nurse yet? Click here to #ThankaNurse!

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From the patients – responses from our #ThankANurse campaign

PicMonkey Collage-ONMI stumbled across this quote a couple of weeks ago as I was reading about Oncology Nursing Month, and I haven’t been able to get it out of my head since:

“When you’re a nurse you know that every day you will touch a life, or a life will touch yours.” (Author unknown)

The author says that every day, a nurse will touch a life—that’s 365 lives a year. Frankly though, I think the author was being modest.

All this month as part of our #ThankANurse campaign, we asked our followers for stories, moments and instances where they were thankful for the nurses in their lives, and we were touched at reading the heartfelt words of gratitude and admiration that patients had to say about their nurses.  More than that, we were astounded by the number of people who remarked on the powerful effect that their nurses had upon them and their treatment.

We decided to take a few of these stories, and share them with all of you; because whether you’re a nurse or a patient it’s always important to see how much a person’s actions can touch someone else’s life:

“There wasn’t a visit that went by without a kind word, smile, pillow or two and a warm blanket to let me know they were here to help me all the way. Even when at home, the calls would come to find out how I was doing—words like, ‘Just call to see if you need anything, how you’re doing.’” – Joan M.

Terri C. and her sister

Terri C. and her sister

“My sister, a nurse, has been my unwavering support this past year in treatments and healing during my second breast cancer diagnosis.” – Terri C.

“There was one nurse that stands out the most, the one who took the time to talk with me despite her own painful circumstances. Unbeknownst to me her own sister was dealing with cancer too. This nurse took the time to give me moral support and encouragement, offering her assistance, her time while walking daily on their own battle. Even after her own sisters death, I received yet another card of encouragement and loving words telling me she was available if I needed to talk, and also offered her prayers and thoughts. My heart was changed that day and to this day my cancer is not a personal journey any more, but a journey to use to reach out and touch others’ lives; to encourage and support others as they walk roads of unknowness. This is medicine to us all, giving and receiving wrapped up in one.”

Marie C. graduating from chemo with 2 of her favorite nurses

Marie C. graduating from chemo with 2 of her favorite nurses

“My nurses, Tammy and Susan, were so supportive in seeing me through my chemo treatments for breast cancer. They helped me every step of the way, from explaining exactly what would happen to prepare me (even though Tammy was embarrassed to realize after the fact that she forgot to warn me that “Red Devil” chemo could color my urine – we laughed about that at my second treatment), to being there during treatments, to checking up on me between treatments and still following me in my survivorship. Nobody wants to spend hours having chemo in an infusion room, but our motto was that as long as you had to be there, you might as well have some laughs – and we did.” – Marie C.

“We never know where our lives will take us, or who we will be talking with, but the one thing we can know is that we can leave this world a richer place by remembering we were never alone; when we share ourselves, a hug, a kind word or two, our time and our lives with another! Thank you to all my wonderful nurses!”

“Huntington Hospital Cancer Center of Pasadena, CA Nurse Navigator Saskia De Koomen showed up while I was drugged in the hospital following my radical hysterectomy for Stage 4 uterine cancer. She kept showing up and calling me until I figured out that she was stalking me to help me get through the worst times of my life. Not only was she there at every stage and critical time, she assembled a team of specialists: “appearance”, diet/nutrition, symptoms management, mindfulness, yoga. Even input as to choosing a Radiation Oncologist. Although I am currently NED, I continue to provide Saskia with copies of all of my medical updates from every imaginable medical discipline (who knew I would have so many specialists!). She continues to be a trusted and valuable member of my “survival team” as I continue this journey.” – Denise D.

To all the angels out there working in hospitals, CSC and your patients offer you our sincerest thanks during this Oncology Nursing Month. Thank you for making sure that no one experiences cancer alone.

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