Did Lung Cancer Claim Your Loved One? Invest 20 Minutes to Help Researchers Find New Treatments!

If your loved one was treated for lung cancer at a community hospital, and has since died, you can help find new lung cancer treatments that might spare other families the anguish you’re feeling.

Lung cancer is the biggest cancer killer. Fortunately, researchers have discovered several new therapies that are helping to turn metastatic lung cancer into a chronic illness instead of an automatic death sentence.  Some of these therapies are effective for 70-80% of patients whose tumors have certain biomarkers .

Unfortunately, not all types of lung cancer have such effective treatments — yet.  Researchers need to find more lung cancer biomarkers and develop more drugs to target them. Discovering these biomarkers and new therapies requires studying LOTS of lung cancer tumor tissue.  If more tumor tissue from different patients were available for researchers to study, we might find new biomarkers and effective targeted therapies faster.

How can I help?

If your loved one was treated for lung cancer at a community hospital, and has since died, you can help by donating your loved one’s archived tumor tissue. 

Researchers usually obtain tumor tissue from lung cancer biopsies and surgeries performed at their academic cancer centers.  However, most lung cancer patients (about 80%) are treated at community and clinics, not academic cancer centers.  Those hospitals generally just archive any tumor tissue that is not needed for guiding patient care, and destroy those tissues five to ten years after the patient has died.  This means a lot of tumor tissue that could be used for finding new lung cancer therapies never gets to researchers.

The National Cancer Institute’s Lung Cancer SPORE at the University of Colorado (I’ll call it CU Lung SPORE for short) aims to help lung cancer researchers find cures faster.  Like other NCI SPOREs, CU has a biorepository (some people may call it a biobank) where they store patient specimens and medical records.  The biobank provides the tissues along with the important clinical background to scientists studying new ways to treat lung cancer, not only from the University of Colorado, but to institutions all around the country. Researchers can search for available specimens and request them for research projects.

The CU Lung SPORE created a pilot study to collect archived tumor tissue and medical records of deceased lung cancer patients, and place these in their biobank so that researchers can use them.  This study focuses on deceased patients because they have no further need of the tissues (living patients may need their specimens for tumor testing later).  The study needs five to ten more family members to submit signed release forms so we can complete the pilot study and assess whether this a feasible way to gather more lung cancer tumor tissue for research.

HIPAA laws forbid a research center from asking patients or family members about donating tissues and medical records if the patient wasn’t treated at their facility. But advocates (like me) CAN ask.

What do I have to do?

To participate, all you need do is:

  • Download the release form (by clicking on this link Family member Release Form (revised 2016-06-23) and fill in some information about you, your loved one, and where your loved one was treated,
  • Sign the release form, and
  • Mail the completed, signed release form to:
    • Mary K. Jackson
    • Team Manager – Specialized Program of Research Excellence [SPORE]
    • University of Colorado Cancer Center
    • 13001 E 17th Place MS B-189
    • Aurora, CO 80045

Filling in the release form only takes about 20 minutes (assuming you have to look up the contact information for the hospital).  Pretty easy, isn’t it?

What happens next?

The SPORE will contact the hospital where your loved one was treated and request your loved one’s archived tissue and medical records. Once these documents are received at CU, they will be reviewed by the study team, de-identified (which means personally identifying information is removed), and placed in the CU Lung SPORE’s biobank.


PLEASE consider donating your deceased loved one’s archived lung cancer tissue and medical records for research through this project. You can learn more by contacting me (the patient advocate for the CU Lung SPORE) at jfreeman.wa@gmail.com, or the CU Lung SPORE at the address above.

Do it to honor your loved one.  Do it for the next family stricken by lung cancer. Whatever your reason, please do it.  We’ve lost too many to this disease.


Note: This research study’s official project title is “Patient-Initiated Biobanking of Deceased Lung Cancer Patient Tissues” and its study number is COMIRB# 15-1294.  It is not a clinical trial dealing with live patients, so you will not find it listed on clinicaltrials.gov.  

Life Between Scans: Call for Submissions


We are happy to announce a new upcoming anthology tentatively titled “Life Between Scans: How to Live with Lung Cancer as a Chronic Illness.”  Its personal essays will show how metastatic lung cancer patients and their loved ones cope with the emotions and situations that arise when you’re taking new precision medicine treatments and know your lung cancer could become terminal at any time.

A group of award-winning lung cancer bloggers is developing this book to share honest personal experiences, offer hope for those dealing with metastatic lung cancer, raise awareness and positive impressions of our disease, and encourage investment and participation in lung cancer research and supports.  These stories will highlight lung cancer patients on precision medicine approved drugs and clinical trials who are living well for months or years longer than those on traditional chemotherapy.

All submissions will be reviewed by the group, with assistance from editor Ann Vandermeer, who has extensive anthology publishing experience both for New York publishers and as a freelancer. Ann has graciously donated her time to this project in support of cancer patients.

Example Essay Topics (not a complete list)

  • The shock of diagnosis or cancer progression
  • Handling stigma and guilt
  • Taking care of yourself (as patient, or as caregiver)
  • Telling (or not telling) others about the cancer
  • “Why me?”
  • Making the choice to live despite the downsides
  • What matters most now? How has that changed after cancer?
  • Making major treatment and care decisions
  • Finding the next step for treatment
  • Why you did (or didn’t) join a clinical trial
  • How manage emotions: anxiety, fear, uncertainty, depression, need for control
  • Becoming an engaged patient or advocate
  • Dealing with symptoms or side effects (pain, cognitive issues, losses, etc)
  • Having “The Conversation” with family about end of life
  • Being the first on a new treatment
  • When your doctor doesn’t have much experience with your treatment or cancer
  • Finding supports or dealing with loss of supports (e.g; loss of friends)
  • Use of complementary therapies (massage, acupuncture, meditation, etc.)
  • Transitioning to hospice
  • Navigating the healthcare system (e.g., coordinating specialists)
  • Effective communication with healthcare providers
  • Value of patient communities
  • How to stay on top of science and research without getting overwhelmed
  • How do you forget about cancer and enjoy life in the moment?
  • Role of the care partner in chronic disease management
  • Financial toxicity
  • How can caretakers and patients both speak honestly about how they feel?
  • Humor as a diversionary/coping mechanism

Submission Deadline

July 1, 2017

Submission Guidelines

  • Essays should be between 750 to 2,500 words. Accepted file types are MS Word, .rtf, and .txt. Please use 12 point Times New Roman font, double spaced, and ensure your legal name is included at the beginning of the file.
  • Essays must be written in first person, and should reflect actual personal experience of either a metastatic lung cancer patient or a primary caregiver of a metastatic lung cancer patient.
  • Essay can be either original work not previously published, or material you personally published on your online blog or in an online support group.
  • Essays from deceased patients may be submitted if the patient meets the criteria above AND the person who is submitting can demonstrate they have the legal right to submit the essay.
  • If a metastatic lung cancer patient/caregiver blog post has touched or inspired you, please submit a link via email so we can review it and contact the author.
  • Each submission will receive an email acknowledging its receipt

Rights and Payments

  • Acceptance decisions will be made by late summer 2017. If your submission is accepted, you will be notified by email along with a contract for consideration.  If you do not receive a notification by the end of September 2017, your work was not accepted for publication.
  • We will pay $0.10/word on final edited word count for nonexclusive worldwide right to print, republish, or reprint the complete anthology in any language or format. Payment will be made upon final edit.
  • Contributors will receive two copies of the book.
  • If authors have other questions about rights or payments, please contact us before submission. We want to make sure all concerns are addressed.

How to Submit

Send an email to lifebetweenscans@gmail.com and include the following:

  1. Your personal essay (as an attachment)
  2. A BRIEF biography (no more than 100 words) for inclusion in the book. At a minimum, this must include:
    • your name (a pen name is OK, but a real name will have more impact for readers)
    • date of diagnosis
    • type of lung cancer (as specific as possible)
    • where you live (state & country, with city if possible)
    • link to your blog or website (if you have one)

    You might also want to include your age at diagnosis, relationship status (married, single, committed partnership, etc.), ages of children at diagnosis, and clinic(s) where you were treated. This information can help inspire readers.

  3. For payment purposes, please provide the following in the body of the email:
    • your legal name
    • mailing address
    • preferred contact email
    • contact phone

Please be sure the contact email and/or phone will be answered even if you are unavailable.

Where will the book be published?

We are negotiating with a small press to get the book published.  We expect the book will be available in hardcopy and in electronic format from online sellers.

What will happen to the income from book sales?

One of our bloggers is funding this project personally. After the payments to authors and production costs are covered, proceeds from the sale of the book will be designated in perpetuity to support lung cancer research at the University of Colorado, one of the premier targeted therapy lung cancer research centers in the world.

Who is on the editorial board?

In alphabetical order:

Last update: 6-Mar-2017 16:00 Pacific Time