• Facebook
  • Rss
  • Twitter
  • Youtube
  • Store
  • Donate
NCCS - National Coalition for Cancer Survivorship
  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Cancer Convos Podcast
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us
  • Search
  • Menu Menu
  • 0Shopping Cart

Year-End MATCH (DEADLINE Dec 31): Donate & Make a Difference | Donate

HeatherVSJ

Guest Post: Mesothelioma Awareness and the Danger of Asbestos Exposure

November 1, 2016/in Cancer Policy Blog NCCS News /by actualize

Guest Post by Heather Von St. James

Who I am

Guest Post by Heather Von St. James

Post by Heather Von St. James

Ten years ago, I was just another woman, wife, and mom-to-be. I was anxiously and happily awaiting the birth of my daughter when I began experiencing symptoms that seemed over the top for pregnancy. Just 3 ½ months after she was born, I found out the truth—that cancer had been growing inside my body for decades, and I had no idea.

I received a diagnosis of mesothelioma cancer and a prognosis of 15 months from my doctor and everything stopped. In that moment, I knew everything for my family and I would change. I’d heard of mesothelioma, but only in passing and usually from commercials on television. I quickly learned that mesothelioma is a rare cancer caused by exposure to asbestos and that my exposure had come secondhand from wearing my father’s work jacket as a little girl while playing outside.

I had a million questions that I needed answers to. How could they let this happen? Why didn’t more people know about this? Why did it take so long? What were my next steps? It wasn’t long before my husband Cameron and I learned that there was a leading expert on pleural mesothelioma in Boston named Dr. David Sugarbaker. We knew that we had to see him.

“I was horrified to know that only some uses of asbestos are banned in the U.S., while it’s still used in a number of ways that can lead to someone else being wrongfully exposed.”
In my time with Dr. Sugarbaker, all of my questions were answered. Asbestos regulation didn’t start until the late 70’s and it was still being used in many products. People weren’t aware because asbestos had been known as such a miracle before and there were still many people who doubted that it caused cancer and other diseases. It took so long because the latency period for mesothelioma can be anywhere from 30-40 years. My next steps? A radical treatment regimen that included an extrapleural pneumonectomy (the removal of my lung and lining around it), the removal of a rib and the lining of my heart, a heated chemo wash of my abdominal cavity, chemotherapy, and radiation.

For the beginning of my treatment, the surgery and recovery, my daughter stayed with my parents. Even though I couldn’t be with her, I was glad to leave her in such capable hands. As I started to recover, I really began to think about my situation and how this happened. How could those companies knowingly expose my father to something like this and why wasn’t it banned? I was horrified to know that only some uses of asbestos are banned in the U.S., while it’s still used in a number of ways that can lead to someone else being wrongfully exposed.

What I Do

Once my health recovered, I was invited to an annual summit with the Mesothelioma Applied Research Foundation (MARF), where I met so many people whose lives have been affected by mesothelioma and asbestos exposure. I connected with amazing people, including Linda Reinstein of the Asbestos Disease Awareness Organization (ADAO). Linda has been a wonderful friend and fellow advocate for these 10 years that I have known her. Shortly after we met, she asked me to speak at the ADAO conference. She truly helped me find my voice as an advocate.

Now, I work tirelessly to help raise awareness for mesothelioma and other asbestos-related diseases and to get asbestos banned. Without asbestos, people would not be going through such a harrowing diagnosis. Something I hear fairly often is that people do think asbestos is illegal in the United States because everyone knows that it’s bad for you. I’m here to tell anyone who will listen that it is not. There are many everyday products that still contain asbestos and no amount of exposure is safe.

One of the biggest things that can be done is to support a bill that was recently introduced into the U.S. Senate. The Alan Reinstein Ban Asbestos Now Act of 2016 – named after my friend Linda Reinstein’s husband who died of mesothelioma – was introduced by Senators Barbara Boxer and Jon Tester. If passed and signed into law, it would ban asbestos immediately, rather than waiting perhaps as long as 12 years for the EPA to “study” a substance we already know kills thousands of people every year. I’ve been encouraging everyone I know to call their senators and tell them to support this crucial bill that would save many, many lives.

I work alongside organizations like the Mesothelioma Cancer Alliance, the Meso Foundation, and the ADAO to help people who have been exposed to asbestos or diagnosed with mesothelioma or another asbestos-related illness. I share my story wherever I can to help spread the word and reach anyone who is going through what I went through with my diagnosis. I don’t want anyone to feel alone or like they can’t fight for themselves or fight for what’s right.


About the Author: Heather Von St. James is a mother, wife, and mesothelioma cancer survivor who shares her message in order to give others hope.

The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

Tags: Advocacy, cancer care, Cancer Survivorship, Guest Post, Mesothelioma, public policy, Survivor Stories
Share this entry
  • Share on Facebook
  • Share on Twitter
https://canceradvocacy.org/wp-content/uploads/2016/11/HeatherVSJ.jpg 2048 1462 actualize https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png actualize2016-11-01 16:24:232016-11-01 16:24:23Guest Post: Mesothelioma Awareness and the Danger of Asbestos Exposure
You might also like
FacebookProfile3 WCOE: Genetic Testing for Cancer Survivors, Survivorship as a ‘Chronic Condition,’ Post-Treatment Neuropathy, Moonshot Funding
NCCS Starburst 250px Health Care Roundup: White House Proposes Health Care Cuts; NCI’s Sharpless to Head FDA; Care Planning; Patient Safety; More
NCCS Starburst 250px Health Care Roundup: Virtual Cancer Policy Roundtable; COVID-19 News; Coronavirus Resources for Survivors; More
Tireless Advocate for Cancer Survivors Remembering Cokie Roberts, a Tireless Advocate for Cancer Survivors
NCCS Starburst Thumbnail WCOE: Planning for Hospice, Difficult Conversations, and Second Opinions
NCCS Starburst Thumbnail WCOE: Becoming a Caregiver, Homemade Cards From A Survivor, Quality of Life Talks, and Atul Gawande’s Latest
NCCS Starburst 250px Health Care Roundup: Health Care Proposals Compared; ‘Surprise Billing’ Under Scrutiny; How Cancer Disrupts Young Adults’ Lives; Medicare Part D; More
Fotolia 23428619 S e1461260836640 NCCS Statement on CBO Report of Senate’s “Better Care Reconciliation Act”

Latest News

CDC Headquarters

NCCS Recommends That States Allocate COVID-19 Vaccines to Cancer Care Providers

March 1, 2021
The National Coalition for Cancer Survivorship (NCCS) and the Cancer Leadership Council…
Read more
https://canceradvocacy.org/wp-content/uploads/CDC_Headquarters_PHIL_pubdomain_1200.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2021-03-01 15:49:432021-03-04 17:45:07NCCS Recommends That States Allocate COVID-19 Vaccines to Cancer Care Providers
Coronavirus feat

COVID-19 Vaccines and Cancer: A Conversation with Cancer Expert Otis Brawley, MD

March 1, 2021
The National Coalition for Cancer Survivorship (NCCS) hosted a conversation on February…
Read more
https://canceradvocacy.org/wp-content/uploads/2020/03/Coronavirus-feat.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2021-03-01 11:49:192021-03-02 16:15:47COVID-19 Vaccines and Cancer: A Conversation with Cancer Expert Otis Brawley, MD
NCCS CancerAdvocacy.org

NCCS Joins Patient, Disability, and Health Care Organizations to Urge U.S. Supreme Court to Protect Medicaid and Rule Against Work Requirements

February 25, 2021
Loss of Patient Protections Would Raise Barriers to Health Insurance — Seventeen patient groups representing millions of Americans with pre-existing conditions filed an amicus curiae (“friend-of-the-court”) brief today in the U.S. Court of Appeals for the Fifth Circuit in the case Texas v. United States, citing the devastating impact patients would face should the court uphold the District Court ruling to invalidate the Affordable Care Act (ACA). [...]
Read more
https://canceradvocacy.org/wp-content/uploads/2019/10/Canceradvocacy-org-default-image.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2021-02-25 17:48:242021-03-04 18:07:26NCCS Joins Patient, Disability, and Health Care Organizations to Urge U.S. Supreme Court to Protect Medicaid and Rule Against Work Requirements

Take Action

Stovall Award

The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.

Join CPAT

The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

Share Your Story

NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.

STAY CONNECTED

Together we can improve cancer care for survivors! Sign up to be the first to know about cancer policy issues and ways to take action

  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • COVID-19 Resources for Cancer Survivors
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Cancer Convos Podcast
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • Order Our Resources
  • News
  • Events
    • From Shadows to Life: A Biography of the Cancer Survivorship Movement
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

National Coalition for Cancer Survivorship
8455 Colesville Road  |  Suite 930  |  Silver Spring, MD 20910
877-NCCS-YES  |  info@canceradvocacy.org
Privacy Policy  |  Terms and Conditions

Copyright © 1995-2021 by the National Coalition for Cancer Survivorship
National Coalition for Cancer Survivorship, NCCS, Cancer Survival Toolbox, and related Logos are registered in the United States as trademarks of the National Coalition for Cancer Survivorship.

NCCS Marks 30 Years of Cancer Survivorship Advocacy 161013 NCCS Reception 065 Cancer Moonshot Webinar Video: “Cancer Moonshot – Symptom Management and Fundin...
Scroll to top

Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute