Call to Action! Need for Advocacy at Cancer Center Resource Rooms

When I was first diagnosed with lung cancer, I wanted to learn as much as I could about my disease. I was informed about the resource center at the Comprehensive Cancer Center where I was being treated.

But where are the lung cancer resources?

I was encouraged to see so see many books and resources about other cancers; however, imagine my disappointment as I searched for the lung cancer section and learned that it did not even exist. This highly ranked cancer treatment facility had zip about lung cancer.

As I became more involved with advocacy, I quickly learned about many resources available free of charge.

Making a difference in cancer resource rooms

Lung cancer patients need reliable information before, during and after treatment. I believed this was so important that within months of my diagnosis, I became a volunteer at my cancer center so I could begin to make a difference in the resource room.

If the material did not promote any specific type of treatment or drug, the cancer center administrators allowed me to order educational materials for the resource room. These resources were free of charge. That was in 2006. At that time, the best materials were produced by the National Lung Cancer Partnership, a leading advocacy organization that has since merged and changed its name to Free to Breathe.

Now, several outstanding organizations produce educational patient materials. In addition, many lung cancer patients/survivors have written books about their personal lung cancer journey or tips for becoming an effective advocate, including my book “The ABCs of Lung Cancer for Patients and Advocates.”

Patients deserve up to date information

I have been what they call NED or No Evidence of Disease since 2006. I changed to a different cancer center for monitoring, which includes an annual CT scan. I now go to another top-notch cancer center.

(I am reluctant to name either facility in this article because I do not want to damage relations. In addition to being treated there, we work with them on other advocacy programs and projects. More importantly, I am hopeful they will be receptive to positive encouragement to add lung cancer materials to their shelves.)

Recently, I had my annual CT scan at the new cancer center facility, which I have been going to for approximately seven years. As usual, I checked out their resource center. The last time I was there, more than a year previous, and the year before that, I had mentioned the lack of lung cancer resource materials.

There were very few lung cancer books and much of what was there was old and out of date.

Advocate for adequate cancer materials

I cannot be at every cancer center. But each of us can accept responsibility to check out our own cancer center’s resource room, and advocate for adequate materials for lung cancer patients.

It’s very discouraging to see three shelves of materials and resources for just one type of cancer. (You guessed it: breast.) Then on one shelf, they cram materials for the following nine cancers: colorectal, esophageal, head and neck, kidney, leukemia, liver, lymphoma, and lung.

My advocacy commitment

This is unacceptable. I will commit to do my best to make a change at this cancer center. Will you do the same at yours? If yours is doing a great job, like another one I wrote about previously, (see Cover Girls) please share that, too.