It’s All About the Guidelines - Cancer Survivorship Research Conference Part 3

One of the most informative plenary sessions was titled Guidelines/ Implementing Survivorship Care.  With the number of cancer survivors estimated to be 14 million  by the ACS the need to have guidelines for implementing survivorship care plans is important. There are four main guidelines each with a different audience.

LiveSTRONG

LiveSTRONG recommends a process for care called Essential Elements which can be used by everyone. http://www.livestrong.org/pdfs/3-0/Essential-Elements-Definitions_Recommendations

NCCN

NCCN guidelines cover:

Anxiety and Depression

Cognitive Function

 Exercise

Fatigue

 Immunizations and Infections

Pain

Sexual Function (female/male)

Sleep Disorders  

This guideline is written for the healthcare professional so a link for patients is unavailable.

ASCO

ASCO published the first of its Survivorship Guidelines in April of this year. They focus on Anxiety and Depression, Neuropathy, Fatigue and Fertility Preservation and are meant for healthcare providers. They can be found at http://www.asco.org/guidelines/survivorship

ACS

The audience for the ACS guidelines is the primary care physician. The first guideline is for prostate cancer can be found at http://www.cancer.org/cancer/news/news/longterm-care-guidelines-for-prostate-cancer-survivors . Additional guidelines will be developed for breast, colon, lung, cervical , ovarian , endometrial , uterine, head and neck and  melanoma.

After learning about these guidelines we heard a discussion of these plans by Julia Rowland, NCI and Doctors Ganz, Wender and Farber. They raised points about the challenges of implementing survivorship plans, the need to train PCPs regarding survivorship issues and the need for evidence based research to show whether or not patients with survivorship plans do in fact have better outcomes.

Dee

Every Day is a Blessing!

Coming Full Circle with LiveSTRONG and The Cancer Survivorship Research Conference

As many of you know, in 2006 I attended the first LiveSTRONG Survivors Summit. Attending that meeting is what launched my work as a cancer advocate and allowed me to network with a number of other survivors who I continue to be friends with.

This past week once again the LiveSTRONG Foundation played a role in my continued advocacy work. They chose me to receive one of twenty scholarships to attend the Biennial Cancer Survivorship Research Conference: Advancing Survivorship Through Multilevel Collaboration in Atlanta, Georgia. The Conference is co-sponsored by the Center for Disease Control and Prevention, the National Cancer Institute,  the LiveSTRONG Foundation, the Department of Health and Human Services and the American Cancer Society. I am so thankful to the Conference planning committee for including survivors and advocates as conference participants and to LiveSTRONG for providing the informative Survivor Advocate program  and supporting my attendance at this amazing opportunity.

While at the Conference I tweeted in real time using the hashtag #CASurvConf. Below is a sampling  of my posts. You can see even more tweets about the conference if you search on Twitter for the conference hashtag.

Informative session re: big data. Good to see PRO being included. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

PRO- Patient reported outcomes

Ganz: survivorship is a chronic disease and we need to use that to move things in Congress etc. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

Orby: need to understand cancer characteristics and co morbidity in selfmanagement #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Salner: one survivorship visit is not enough . Need to find way to fund continuous monitoring #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Mohile: Geriatric assessment can ID patients at risk for increased toxicity. Chemo leads to neuropathy leads 2 falls in older #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Goodman : guidelines need to include co-morbidity #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Yes we do “@sfuldnasso: Ellen Stovall: "We need a well-funded cancer survivorship program in this country. There's no excuse." #CASurvConf”
— Women of Teal (@womenofteal) June 18, 2014

Although I will not be reporting on every session I attended during the 3 day conference, I will share some insights into the research and topics I found most interesting.  I will cover these topics :

Social Ecologic Methods related to cancer Survivorship - Part 1
Session Highlights -Part 2
Survivorship Guidelines- Part 3
Ovarian Cancer Studies- Part 4
Interesting Interactions - Part 5

Be sure to check back for more information.

Dee
Every Day is a Blessing!

I Am LiveSTRONG

I usually tend to stay away from sports news and controversy on this blog but after reading some comments and listening to news reports about Lance Armstrong and the LiveSTRONG Foundation, I feel I need to share my thoughts with my readers. 

Was Lance Armstrong wrong to dope? Yes. Was he wrong to lie about it? Yes. Am I disappointed in his actions? Yes. 

Do I still support the LiveSTRONG Foundation? Yes. Why, you ask? Unless you are a cancer survivor you may not understand this but I am LiveSTRONG and so is Brian, Katie, Crissy, Ron, Kendall, Henrike, Cindy and thousands of other survivors and caregivers. 

Let me explain.  Make believe you are Clarence, the Angel, from It’s a Wonderful Life ( My favorite movie). You go back in time and show me what my life would be like without my experiences with LiveSTRONG. 

If I didn’t attend the very first LiveSTRONG Survivors Summit Austin Texas in 2006 I would not be the cancer advocate I am today. You would not be reading this blog. Attending the Summit gave me the confidence that I could make a difference in the lives of other ovarian cancer survivors. 

If I had not attended the Summit there may not be a Gynecologic Cancer Support Group at my cancer center. Part of my action plan after the Summit was to establish a cancer support group specifically for gynecologic cancer survivors at my cancer center. With the support of my gyn-oncs and the center’s social workers the group was created. It is still in existence today almost 8 years later. 

If I wasn’t a representative at LiveSTRONG Day in 2007 I would never had learned how to advocate for increased support for cancer research and survivorship issues with members of Congress and my local officials. 

If I had not attended the LiveSTRONG Survivors Summit in 2008 I would not have presented a workshop on Advocacy at the Cancer Support Community- Central NJ ( CSC-CNJ) .  

If I had not met other cancer survivors from around the country at those Survivor Summits I would not have been aware of opportunities to raise awareness of ovarian cancer and survivorship issues. Thanks to Katie, I applied and was accepted as a Research Advocacy Network - Focus on Research Scholar and attended the Annual ASCO meeting in Chicago in 2011. I shared my experience at ASCO on my blog and presented two workshops on Understanding Cancer Research at CSC-CNJ. 

If I had not walked the Philly Livestrong Challenge raising funds for LiveSTRONG I might not have helped other survivors. 

So you see LiveSTRONG made a big difference in my life. It is not about the bike it is about hope and knowledge and uniting with other survivors.  I will continue to LiveSTRONG. 

Dee

Every Day is a Blessing!

Blue Claws Game to Support LiveSTRONG

Have fun at the July 29, 2012 Lakewood Blue Claw's  baseball game and help Jersey Shore Area for LiveSTRONG support LiveSTRONG which provides navigation services to cancer survivors and caregivers.

Find more information on the flyer below or at http://jerseyshorearea4livestrong.wordpress.com/2012/04/21/lakewood-blueclaws-livestrong-themeawareness-night-flyer/.

Be sure to wear yellow!Over 300 tickets have been sold so call soon if you want to show your support. 

Dee

Every Day is a Blessing!

Making the First Cut

I am so pleased that CINJ/ Robert Wood Johnson Medical School has qualified to be a recipient of a LiveStrong Community Impact Project this year.

This year votes from the public will determine which organizations receive the Impact Grants. There are three types of programs to be funded- Creative Center :Arts in Healthcare, Supersibs, and Cancer Transitions. CINJ has applied for a Creative Center :Arts in Healthcare Grant.From their application-

"CINJ is a robust clinical enterprise with over 83,000 patient visits in 2009. For our 2010 Survivors Day Celebration, Robin Glazer, Director of the Creative Center: Arts in Healthcare was the key-note speaker at the Cancer Institute of New Jersey (CINJ). Attendees of this program (patients, family members and health care providers) loved the Creative Center's approach and philosophy. Several attendees contacted our office and the Creative Center's to learn more about this program. Promoting healing experiences is crucial, and with an Artist in Residence Program we will have the opportunity to institutionalize this value into our existing operations."

Now it is up to us - patients, caregivers and supporters of CINJ to vote so that the Creative Center :Arts in Healthcare program can be implemented at CINJ. Ok I am a bit biased but having taken a short art therapy program a few years ago I think other patients at CINJ would benefit from taking part.

Please click on this link to vote every day:

http://vote.livestrong.org/applicants/102-the-cancer-institute-of-new-jersey-robert-wood-joh/

Dee

Every Day is a Blessing.

I've Been Accepted!

I am thrilled to have received an e-mail letting me know that I have been accepted to attend the LiveStrong Summit 2008 in Columbus, Ohio in July . I had such an awesome time at the Summit in 2006 in Austin that I can't wait to register and meet some old friends and make some new friends. I will wear teal in the hopes of meeting other Ovarian Cancer survivors. I am looking forward to attending the Advocacy workshops.

Unity is strength- Knowledge is Power and Attitude is Everything-

LiveStrong!
Dee