Friday, August 31, 2018

The Wall of Silence – Endometrial Cancer

New post on New Focus Daily

The Wall of Silence – Endometrial Cancer

by New Focus Daily

New Focus Daily’s Cindy Chafin has been chatting with Colleen Johnson – also known as Granny Ruth Hogg – to discuss her amazing story of survivorship and triumph. You can read Colleen's earlier May interview here. This inspirational lady is at it AGAIN and we are sharing her own words below about her next race and breaking the "Wall of Silence" about endometrial cancer. This article is text from a letter Colleen wrote to the National Comprehensive Cancer Network (NCCN) in response to questions asked of Colleen. The NCCN has power in the cancer community, and they are on board to trying to help give the Manchester, TN “A Race for the Ages” which is Colleen is participating in, attention as well. This article is scheduled to post at the exact time Colleen begins her race, 9:00 p.m. CST on Friday, August 31st. By clicking this link, we can follow Colleen’s progress. All results will be posted live online, and will automatically update each time a runner crosses the start/finish line. Visit Colleen’s website below to see the results - http://www.ultratimingpros.com – or through this direct link. #GoColleen! #WallofSilenceDestroyed Colleen’s Words: My most important goal that I am working on [...]

NEW: Cancer Policy Institute Newsletter

August 2018

Dear Catherine,

As we head into Labor Day weekend, we are reflecting on a summer that included a flurry of policy activity. Most notably, efforts to shape the health care system continue, particularly through the Executive Branch. In August, we joined 10 other organizations to submit comments on the Trump Administration’s Blueprint to Lower Drug Prices and Reduce Out-of-Pocket Costs.

As you will see below, we are concerned about policy decisions that have the potential to remove patient choice and negatively impact people at risk for, or living with a history of, cancer. However, we are constantly heartened by the efforts of advocates like Mirchelle Louis of Dallas, Texas, our fearless affiliate leader who won this year’s policy and advocacy award.

As policy changes show no sign of slowing down, we hope you will continue to share your stories and work with us as we help decision makers understand the implications that policies have on the real lives of patients and survivors every day. Thank you for everything you do.

Elizabeth F. Franklin, LGSW, ACSW
Executive Director
Cancer Policy Institute
action@cancersupportcommunity.org

CMS Decides to Put Treatment Decisions in the Hands of Insurers

On August 7, the Centers for Medicare and Medicaid Services (CMS) issued guidance giving Medicare Advantage (MA) plans (private insurance plans approved by Medicare that cover hospital and medical expenses) the option of applying prior authorization and step therapy for physician-administered and other Medicare Part B drugs (effective January 1, 2019) stating that this policy change will lower costs, improve quality of life, and ensure that patients receive the most preferred treatment.

Advocate Spotlight: Mirchelle Louis, Dallas, TX

"I know we’re all super busy, but advocacy is very important and this is a great time to get involved. You’ll really enjoy the experience and our voices and especially the voices of our participants do make a difference."

Read more from Mirchelle and her passion for defending and increasing access to health care for all.

There are so many ways to engage in advocacy. If you are active in your community, your state, or across the country, share your advocacy story with us-- you may be featured in the next newsletter!

Share my story

CSC and it's Gilda's Club Affiliates are available all over the country

The Cancer Support Community and it's Gilda's Club Affiliates are in over 40 locations nationwide, over 170 hospitals and community locations and even has international locations! Our local affiliates provide dozens of opportunities to connect with a community, learn, and benefit from a host of completely free programming. Our CSC North Texas affiliate hosts over 100 programs, classes, or workshops per month alone. Visit our website to find CSC/GC locations and programs nearest you.

Find a CSC location

Short-Term, Limited Duration plans harm patient access

On August 1, 2018, the Administration finalized another policy that will impact access to quality health insurance coverage by expanding the availability of short-term, limited duration (STLD) insurance plans that are not required to cover essential health benefits or pre-existing conditions. Read our blog to learn more about these plans and how they could affect your ability to get quality health insurance coverage.

For breaking updates on health policy news and opportunities to engage, follow us on Twitter! Click on the Twitter icon or find us @CSCCancerPolicy

TIP OF THE DAY: Get Kids Moving !

Get kids moving!

Create a backyard obstacle course complete with pool noodle balance beam, hula hoop hopscotch, and a jump rope station.

10 Tips: Be an Active Family
More ways to be active

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The Ups and Downs of Cancer Survivorship

I know that once you are a cancer survivor, you're always a cancer survivor, but will that sinking feeling of no control ever go away?

BY KATE BELAND

PUBLISHED AUGUST 30, 2018

Kate Beland does not believe that cancer defines her. She is an athlete, a marathoner, a mother, a wife and a writer. When she is not conducting her three-ring circus act, she is busy kicking late stage melanoma's butt and keeping herself sane through her writing and running: https://www.facebook.com/runningandcancer/ or www.runliftbreathe.blogspot.com

I've been in a weird kind of funk the past couple of weeks, and it seems to be coming to an all-time high right now. It is beginning to feel like each week I have been hit with another piece of bad news in the world of cancer. I've been living my life to the best that I can every 89 days until the next blood work and scans, and I really don't even think about cancer – like ever – until this past month.

I have been watching people lose their loved ones to this beast. I have watched more people like me, healthy and fit, get diagnosed with various types of cancer. I have friends still under treatment that is like a slave to the worst of all masters. And I have friends who are fighting the good fight, but keep receiving bad outcome after bad outcome.

It has started to wear me down. It is making it increasingly difficult to fake it until I make it, or my new mantra, fake it until I become it. I thought I had become it – that strong warrior who shut the door. But lately, I feel like I've been held hostage, had all my defenses stripped. It's trying to break down the door.

Read the full post

Thursday, August 30, 2018

Get Ready for Pinktober! It's Coming!

Every year since 1994, we celebrate breast cancer awareness during the month of October. It's a special time of education and celebration. Learn more in this article.

BY BONNIE ANNIS

PUBLISHED AUGUST 29, 2018

Bonnie Annis is a breast cancer survivor, diagnosed in 2014 with stage 2b invasive ductal carcinoma with metastasis to the lymph nodes. She is an avid photographer, freelance writer/blogger, wife, mother and grandmother.

Way out in the great sea of merchandising, a pink tsunami is building. In just a few weeks, a tidal wave of pink ribbons will wash ashore in celebration of the infamous “Pinktober.” What is this madness, you say? If you've never experienced the mighty, rushing wind of pinkness, get ready. It's coming and there's nothing you can do to stop it.

The first October after I was diagnosed with breast cancer was daunting. Still in the midst of treatment, I was unprepared and caught off guard by what many knew to be Pinktober. My unfamiliarity with the term caused me to do some digging. What was it and how would it affect me? These were questions that needed answers. My curious mind wanted to know.

Read the full post

Tip of the Day :Keep It Simplw with one Dish

Keep it simple with one dish.

You don’t have to dirty every pot and pan to cook a healthy dinner. Make a one-dish meal like a stew stir-fry for easy clean-up!

Recipe: Arroz Con Pollo
More healthy eating tips.

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Wednesday, August 29, 2018

August Newsletter from the Cancer Support Community

Dear Friends,

August gave us multiple chances to recognize cancer patients and their loved ones.

This month included paying tribute to the legacy of late Sen. John McCain, joining with our affiliates at the Affiliate Leadership Conference in Indianapolis, and discussing making treatment decisions for metastatic breast cancer.

Please take a look below at what else we were up to in August and spread the word to your friends and family about our free resources.

In Appreciation,

The Cancer Support Community Team

CSC Honors Sen. John McCain

On Saturday, August 25, Sen. John McCain passed away from glioblastoma, a rare form of brain cancer.

We joined with millions of other Americans in honoring the late senator.

If you or a loved one has been diagnosed with brain cancer, we are here to help. View our brain tumors & spinal cord tumors page for resources and support.

Opportunity to Listen: MBC Radio Show

The latest episode in our special series “Spotlight on Metastatic Breast Cancer” focused on deciding on a course of treatment when you are first diagnosed with metastatic breast cancer or when it is time for a new or different treatment.

Thanks to better and more targeted treatment options, women are living longer than ever with metastatic breast cancer.

How do you decide which treatment plan is the best match for your priorities and your preferences? And how do you communicate your goals for treatment with your medical team?

Our guests this week were Gaby Kusko, who has been living with metastatic breast cancer for over four years, and Lillie Shockney, the Administrative Director of the Johns Hopkins Breast Center.

CMS Decides to Put Treatment Decisions in the Hands of Insurers

On August 7, the Centers for Medicare and Medicaid Services (CMS) issued guidance giving Medicare Advantage plans (private insurance plans approved by Medicare that cover hospital and medical expenses) the option of applying prior authorization and step therapy for physician-administered and other Medicare Part B drugs (effective January 1, 2019). CMS stated that this policy change will lower costs, improve quality of life, and ensure that patients receive the most preferred treatment.

We are concerned that this new guidance will delay access to treatment, limit patient preference, and will not lower the cost of drugs.

Learn more on our blog: https://bit.ly/2PM5bmn

Share Your Cancer Experience

The Cancer Experience Registry is a unique online community that allows people facing cancer to share their experience, identify the issues that impact their lives, take surveys, access resources and learn from each other.

It is free, confidential and open to anyone who has been diagnosed with cancer or provides care to someone with cancer.

Share your cancer experience today.