New Requirements for Patients and Survivors Needs

Started by anonymous, March 08, 2014
1 reply for this topic

Posted on
March 08, 2014

A patient skips a chemotherapy appointment because he cannot face feeling so terribly ill again; his care providers were unaware of his anxiety. A survivor exhibits symptoms of heart problems years after treatment ends, and neither she nor her new family doctor connect them to the lymphoma treatment she received more than a decade before.

There can be so much compartmentalization in cancer treatment and a lack of coordination among providers,” says Shelley Fuld Nasso, chief executive officer of the National Coalition for Cancer Survivorship (NCCS). “We believe it’s important to look at the whole experience of cancer—what patients are going through on an emotional level, what kinds of care survivors need.”

The NCCS and other organizations have advocated for clear standards of care that serve the needs of cancer patients and survivors. In response, the American College of Surgeons’ Commission on Cancer (CoC) announced in 2011 that it would add new, patient-centered requirements for cancer treatment facilities seeking CoC accreditation. Among the new rules: By 2015, cancer centers must provide clear, concise survivorship plans to every patient.

“With survivorship care plans, patients will leave with a comprehensive medical summary and a complete list of what to look for, what to be aware of,” says Nina Wendling, chief operating officer of the NCCS. “The care plan will outline when and which doctor they should see for surveillance and follow-up tests and provide information on long-term and late effects of both cancer and cancer treatment.”

This is something that has really been important to NCCS for a long time. While we hope for the cure, we focus on the care.

Also among the CoC’s requirements for 2015: accredited cancer programs must screen patients for symptoms of distress associated with facing what could be a long-term disease with serious costs, disruptions to family routines and new responsibilities. Such distress is common in cancer patients and survivors but is often not identified or treated.

The requirements seem likely to have a substantial impact: the CoC reports that about 70 percent of patients with newly diagnosed cancer in the U.S. receive treatment in oneof more than 1,500 CoC-accredited facilities. So, by 2015, these patients will leave their final oncology appointment with a document containing a brief history of their diagnosis and treatment, as well as a plan for their future health care. And fewer will go home with unrecognized depression and anxiety.

Many cancer programs are already taking action, Wendling says. She is working with some programs to integrate a survivorship care planning program called Journey Forward. In addition to the NCCS, collaborators on the project include experts from UCLA’s cancer survivorship center, the Oncology Nursing Society, WellPoint, Inc., and drugmaker Genentech.

The Journey Forward program provides free, downloadable software with tools and protocols that administrative support staff, social workers, oncology nurses and physicians can use to ensure that patients receive a survivorship care plan they can share with their other healthcare providers.

“This is something that has really been important to NCCS for a long time. While we hope for the cure, we focus on the care,” Fuld Nasso says.


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Posted on
May 17, 2015
That is so important. I confess the Treatments lack of tests, Helpful, needful scripts I couldn't afford was hard on my body. My Triple Negative Breast Cancer treatments left me feeling like I was Tortured and left to die! Having zero income all of these years is so very hard. Having no biological health history made life so much Worse. Other then knowing my mother's parents died when they were young! She Died when she was 46 from Breast Cancer!! I located her before Breast Cancer claimed her young life. I was 19, & pregnant without any family. How I hoped my own mother could for the first time in my life be in my family. It wasn't meant to be! She never shared if I had a dad or his name or even my nationality. I can't get her Dying look out of my face/head/mind. I saw her Dying look on my own face as I was feeling like I was Dying! Fighting Triple Negative breast Cancer was a burden to my own family. We had no income! We couldn't even afford decent food or safe drinking water! I couldn't have any of the needful tests all have!!Even or vehicles weren't trustworthy to get me to the numerous appointments far away. Since I live in the rural country. The middle of nowhere.. I have endless head to toe non stop Pain! My teeth are breaking and falling out!! I can only walk so far and I fall. My hands drop most things out of them without any warning. I can't think straight, compute, add, spell right or even talk well. I Have such a Chemo Brain & and its Disabling. As is my tried, fatigue endless painful body! My shins, feet and legs hurt so bad. They feel like I walk on hot fire & coals while someone pounds my toes with a hammer!! My back hurts so bad as my hip.. The Jenaga blocks-effect.. My breast aches, hurts and throbs. My ribs feel so brittle and hurt so bad. It would be easier to explain what doesn't hurt ache or throb if I could truthfully tell you this. In all honesty I can't! I found out in August 2014. I am BRCA1+ Positive. They assume my mother had to be as well. Now I worry about my Married daughters. I worry for my grand children. I needed to know that testing 4 years ago.. I am still alive! Living on Love, Prayers, Credit cards without income or means! I feel so broken. I can't explain to you what my heart does & how it is affected. But Wow!! Never Ever was I told I'd be this shell of me from all I went through.. When do I get Quality of Life? How can I live and go on without any income, means or help?? My long time husband lost his job in '09. He became my caregiver. He's still jobless. We met one Christmas Eve. I was all alone and no family when I was just 16. He was just 18. We're still together.. He keeps me going .. Its been a lifetime of stress, hardships, pain and I can't see it getting any better. I don't know what to do. Since my oncologist never addressed all of these 'Collateral-Damages' I'm struck with. I no longer see him. I'm Broke and broken. I don't know what to do! But for once I'd like a Happily ever after. Being NED, Cancer Free & able to live, work, function & have a good new normal. But How!? I am lucky to be alive this long! I Thank God each day.. But I am losing this fight of hanging on.. Endless pain, bad luck and bills sucks the life out of you... I Live for the Day of a TNBC Cure. A Cure for all Cancer. Cancer prevention with Quality of life afterwards...

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